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SYMPOSIUM THEME
Hemoglobin S - Making an Evolutionary Perfected Process, Imperfect 

Journal of Sickle Cell Disease and Hemoglobinoopathies
SYMPOSIUM ABSTRACTS

Meeting Location:

Greater Ft. Lauderdale Convention Center
1950 Eisenhower Blvd, Fort Lauderdale, Florida, USA  33316
April 28 - 30, 2017 
Website:  fscdr.org
Email:  symposium@fscdr.org
Is this a CME Medical Meeting?  Yes
 
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Friday, April 28
 

9:00am

Registration
Friday April 28, 2017 9:00am - 5:00pm
Prefunction Floridian 3rd Floor

11:00am

NIH Focus Groups for Patients
Patients are invited to join NIH for a focus group. NIH Wants your Thoughts on Gene - Editing.  A new gene-editing technique is taking is taking the scientific c research and healthcare community by storm with the promise it holds to cure and ease the burden of debilitating diseases.

Space is limited!!

FOR MORE INFORMATION AND/OR TO PARTICIPATE IN THIS STUDY, EMAIL SCDVOICES@MAIL.NIH.GOV | OR CALL 301-496-4590

Moderators
avatar for Vence L. Bonham, J.D.

Vence L. Bonham, J.D.

Senior Advisor to the Director on Genomics and Health Disparities, National Institutes of Health
Vence L. Bonham, Jr.  J.D. is an associate investigator in the Social and Behavioral Research Branch of the Division of Intramural Research at the National Human Genome Research Institute and Senior Advisor to the Director of the National Human Genome Research Institute on Genomics and Health... Read More →

Friday April 28, 2017 11:00am - 12:45pm
317 South Lobby 3rd Floor Fort Lauderdale Convention Center

1:00pm

Opening Session Plenary I
Welcome Address - Lanetta Bronte, MD, MPH, MSPH

Moderators
avatar for Lanetta Bronte, M.D., MPH, MSPH

Lanetta Bronte, M.D., MPH, MSPH

President and Founder, Foundation for Sickle Cell Disease Research

Friday April 28, 2017 1:00pm - 1:15pm
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

1:15pm

East Meets West - Kalpna Gupta, PhD. Highlights of 3rd Global Sickle Cell Disease Congress in Bhubaneswar, India
Kalpna Gupta, Ph.D. 
Highlights of 3rd Global Sickle Cell Disease Congress in Bhubaneswar, India

Yazdi Italia, Ph.D.

Projects to Programmatic mode - Gujarat experience of Sickle Cell Anemia

Lakshmanan Krishnamurti, M.D.
Hematopoietic Cell Transplantation for State of the Heart

Kanika Gupta
Pain Characteristics in Children with Sickle Cell Disease in Central India

Andrew Campbell, M.D.  
Traditional Medicine Use in Ghanaian SIckle Cell Patients: An Analysis of its effectiveness for pain management 

Moderators
avatar for Kalpna Gupta, Ph.D.

Kalpna Gupta, Ph.D.

Professor Of Medicine, Vascular Biology Center, Division of Hematology, Oncology and Transplantation, University Of Minnesota
Department of Medicine Co-leader, Tumor Microenvironment Program
 Masonic Cancer Center Co-leader, Molecular and Cellular Engineering Program Institute for Engineering in Medicine

Speakers
avatar for Kanika Gupta

Kanika Gupta

Student, Psychology Major, Wellesley College
Kanika Gupta is a sophomore at Wellesley College, in Wellesley, MA, majoring in Psychology. She is researching on neuronal pathways of brain, in the Department of Brain and Cognitive Sciences at MIT, Massachusetts, and on global presentation of pain in Sickle Cell Disease. Her go... Read More →
avatar for Lakshmanan Krishnamurti, M.D.

Lakshmanan Krishnamurti, M.D.

Professor, Director of BMTChair of Blood and Marrow Transplant Aflac Cancer and Blood Disorders CenterChildren’s Healthcare of Atlanta, Emory University
Professor, Director of BMTChair of Blood and Marrow TransplantAflac Cancer and Blood Disorders CenterChildren’s Healthcare of Atlanta/Emory University
avatar for Andrew Campbell, M.D.

Andrew Campbell, M.D.

Director, Pediatric Comprehensive Hemoglobinopathies Program Assistant Professor Department of Pediatrics Division of Pediatric Hematology/Oncology Co-Director, Minority International Research Training Program Center for Human Growth and Development, University of Michigan
Dr. Campbell is a graduate of Case Western Reserve School of Medicine completed his residency training @ Harvard Affiliated Massachusetts General Hospital in Boston followed by Pediatric Hematology/Oncology Fellowship @ Northwestern University. Currently he directs the Comprehensive Pediatric Hemoglobinopathies Program which includes the Pediatric Sickle Cell and Thalassemia clinic @ the University of... Read More →
avatar for Yazdi Italia, Ph.D.

Yazdi Italia, Ph.D.

Translation Scientist
Dr. Yazdi Italia, Ph.D. is a Translation Scientist. Since 1978, He is one of the pioneers and Ex. Hon. Director (2006 - 2012) of India’s first Sickle Cell Anemia Control Program of Government of Gujarat. This program was awarded Prime Minister’s Award as a model project for all India... Read More →


Friday April 28, 2017 1:15pm - 2:00pm
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

2:00pm

Patient-Reported Outcomes in Sickle Cell Disease

Goal:

  • Articulate how patient-reported outcome measures can be used to improve our understanding of treatments and interventions in sickle cell disease

Speakers and Affiliations

  • Wally Smith, MD, Virginia Commonwealth University
  • Carlton Dampier, MD – Emory
  • Ken Bridges, MD – Global Blood Therapeutics
  • Lakiea Bailey, PhD  – Sickle Cell Consortium


Moderators
avatar for Wally Smith, M.D.

Wally Smith, M.D.

Florence Neal Cooper Smith Professor of Sickle Cell Disease Vice Chair for Research Division of General Internal Medicine, Virginia Commonwealth University
Wally R. Smith, MD, Florence Neal Cooper Smith Professor of Sickle Cell Disease at Virginia Commonwealth University, is an adult sickle cell provider and clinical researcher.  He is the Principal Investigator (PI) of Start Healing in Patients with Hydroxyurea (SHiP HU), and the P... Read More →

Speakers
CD

Carlton Dampier, M.D. CPI

Professor of Pediatrics, Director, Ethics and Regulatory Program Atlanta Clinical and Translational Science Institute, Chair, Childrens Healthcare of Atlanta IRB, Vice Chair, Emory University IRB, Emory University School of Medicine
avatar for Kenneth R. Bridges, M.D.

Kenneth R. Bridges, M.D.

Vice President, Medical Affairs, Global Blood Therapeutics
Dr. Kenneth R. Bridges received the MD degree from Harvard Medical School, and subsequently trained in internal medicine and hematology in Boston, at Massachusetts General and Brigham and Women’s Hospitals, respectively. Following medical subspecialty training, Dr. Bridges worked on the biology of cellular iron metabolism for three years at the National Institutes of Health in Bethesda, Maryland. Dr. Bridges returned to Harvard as a member of the Hematology Division at Brigham and... Read More →


Friday April 28, 2017 2:00pm - 3:45pm
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

3:45pm

Break
Friday April 28, 2017 3:45pm - 4:00pm
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

4:00pm

Investigational Drugs, Therapeutic and Device Symposium
W. Keith Hoots, M.D., N.I.H

Ted W. Love, M.D. 
GBT440: Addressing the Fundamental Cause of Sickle Cell Disease 

Amhed Daak, M.D., Sancilio 
SC411: Cervonic Acid-Based treatment for children with Sickle Cell Disease

JSCDH-D-17-00043,  Edward Gomperts, M.D., Hillhurst Bio

HBI-002, an oral carbon monoxide therapeutic, is a modulator of vaso-occlusion in transgenic sickle cell mice 

JSCDH-D-17-00007, Ronald Jubin, Ph.D., Prolong Pharmaceuticals

SANGUINATE Returns RBCs To More Normal Morphology In Patients With VOC 

JSCDH-D-17-00005, Josh Lehrer, Global Blood Therapeutics Inc

Long-Term Dosing  in Sickle Cell Disease Subjects with GBT440, A novel HbS polymerization inhibitor

JSCDH-D-17-00008, Ken Bridges, Global Blood Therapeutics Inc
The 9-item Sickle Cell Disease Severity Measure (SCDSM): A novel measure of daily SCD symptom severity developed to assess benefit of GBT440, an experimental HbS polymerization inhibitor

JSCDH-D-17-00016, Robert J. Charnigo, Pfizer
Safety and Tolerability of PF-04447943 Across a Clinical Trial Program Including 267 Patients

JSCDH-D-17-00026,  Osheiza Abdulmalik, M.D., Children's Hospital of Philadelphia 
Anti-sickling Properties of a Novel Structurally-Enhanced Pyridyl Derivatives of Vanillin

Moderators
avatar for Gregory J. Kato, M.D.

Gregory J. Kato, M.D.

Professor Of Medicine, University of Pittsburgh, Department of Hematology-Oncology; Heart, Lung, Blood, and Vascular Medicine Institute
Dr. Kato is the Director of the Adult Sickle Cell Center at the Pittsburgh Heart, Lung, Blood and Vascular Medicine Institute and Professor of Medicine at the University of Pittsburgh.  He attended George Washington University School of Medicine and Health Sciences, completed residency in pediatrics at... Read More →

Speakers
avatar for W. Keith Hoots, M.D.

W. Keith Hoots, M.D.

Director of Blood Disease and Resources at the National Heart, Lung and Blood Institute (NHLBI) NIH National Blood and Heart Institue, National Institute of Health
W. Keith Hoots, M.D., is the director of the Division of Blood Diseases and Resources at the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH). In this role, Dr. Hoots plans and directs research and research training on the causes... Read More →
avatar for Edward Gomperts, M.D.

Edward Gomperts, M.D.

Executive Chairman, Hillhurst Biopharmaceuticals, Inc
My academic focus has been on non-oncologic hematology throughout my career. I am currently Emeritus Clinical Professor of Pediatrics and Pathology at the University of Southern California and an attending hematologist at Children’s Hospital, Los Angeles. I spent over 15 years i... Read More →
avatar for Josh Lehrer, M.D.

Josh Lehrer, M.D.

Vice President, Clinical Development, Global Blood Therapeutics
Dr. Lehrer is a cardiologist, physician scientist and biotechnology executive. He is currently Vice President, Clinical Development at Global Blood Therapeutics, where he has overseen the clinical development program strategy and execution for GBT440, bringing this molecule through early stage studies into a pivotal Phase 3 program in Sickle Cell Disease. Prior to GBT, Dr. Lehrer led clinical development programs through proof of concept at Genentech in multiple indications and held key roles in business development and overseeing cardiovascular safety. Dr. Lehrer has served as adjunct faculty in the Division of Cardiology at Stanford School of... Read More →
avatar for Ted W. Love, M.D.

Ted W. Love, M.D.

Chief Executive Officer, Global Blood Therapeutics
Dr. Love has more than 20 years of broad leadership and management experience in the pharmaceutical industry. Dr. Love most recently served as executive vice president, research and development and technical operations at Onyx Pharmaceuticals, where he played an instrumental role in initiating and completing several of... Read More →
avatar for Kenneth R. Bridges, M.D.

Kenneth R. Bridges, M.D.

Vice President, Medical Affairs, Global Blood Therapeutics
Dr. Kenneth R. Bridges received the MD degree from Harvard Medical School, and subsequently trained in internal medicine and hematology in Boston, at Massachusetts General and Brigham and Women’s Hospitals, respectively. Following medical subspecialty training, Dr. Bridges worked on the biology of cellular iron metabolism for three years at the National Institutes of Health in Bethesda, Maryland. Dr. Bridges returned to Harvard as a member of the Hematology Division at Brigham and... Read More →
avatar for Robert J. Charnigo, M.S.

Robert J. Charnigo, M.S.

Senior Director, Pfizer
Bob is a Senior Director in Pfizer’s Early Clinical Development Organization specializing in Rare Disease. Bob has served as the clinical lead for the development of PDE9 inhibitor for the prophylactic treatment of sickle cell disease. | | Prior to his involvement on the PDE9i team, Bob served for approximately 10 years on the legacy Wyeth/Pfizer hemophilia team and ultimately served as the clinical lead for Xyntha and ReFacto AF (factor VIII replacement products for hemophilia A) during a period when the focus was on global clinical post-marketing studies aimed both at new indications and regulatory commitments. | | Overall, Bob has over 32 years of clinical research experience (phases 1-4) in large pharma, imaging and medical device companies. His experience covers numerous therapeutic areas including, sickle cell disease, hemophilia, oncology, infectious disease, cardiology, and respiratory diseases. Bob received his... Read More →
avatar for Ahmed Daak, Ph.D., MSc, MBBS

Ahmed Daak, Ph.D., MSc, MBBS

Vice President of Research and Clinical Development, Sancilio & Company, Inc.
Dr Daak has a Bachelor degree in Medicine, Bachelor degree in Surgery (MD), Masters in Medical Biochemistry, in addition he has a Ph.D. on Biomedical Science from London. Before joining SCI Dr. Daak was working at Harvard School of Public Health (HSPH), Harvard University, USA as... Read More →
avatar for Ronald Jubin, Ph.D.

Ronald Jubin, Ph.D.

Vice President of Research and Development, Prolong Pharmaceuticals
Dr. Ronald Jubin is Vice President of Research and Development at Prolong Pharmaceuticals, a clinical stage pharmaceutical company developing PEGylated protein therapeutics for clinical conditions with unmet needs. His responsibilities include leading the organization in both pipeline development and translational research that spans the pre-clinical IND-enabling efforts, CMC through proof of concept clinical studies, and biomarker discovery/method development to support clinical trials of... Read More →
avatar for Osheiza Abdulmalik, Ph.D.

Osheiza Abdulmalik, Ph.D.

Research Associate II, Rivella Laboratory, The Children's Hospital of Philadelphia, Research Institute
Dr. Abdulmalik’s research interests broadly encompass the hemoglobinopathies and red blood cell disorders, with particular focus on sickle cell disease and beta-thalassemia. Though both disorders are consequences of simple genetic mutations, the implications of these mutations are inherently complex, and include significant morbidities, lifelong challenges, reduced quality of life, and early mortality in patients; as well as substantial healthcare burden on families, caregivers, and society in general. Dr... Read More →


Friday April 28, 2017 4:00pm - 6:00pm
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

6:00pm

Buses Load/Depart for FSCDR Welcome Dinner
Buses will depart from the Convention Center beginning at 6:00pm and ending at 6:30pm.
Buses will depart from Hugh's Catering beginning at 9:30pm to the final destination, Hilton Marina Hotel. 

 

Friday April 28, 2017 6:00pm - 6:30pm
Floridian Foyer

7:00pm

FSCDR Welcome Dinner featuring Celebrity Chef Jerome Brown. Guidelines for Opioid Prescription, Random Urine Drug Screen and Prescriber Behavior when Faced with THC Positivity featuring speakers Abdullah Kutlar, M.D., Samir K. Ballas, M.D., Thomas David,
Join FSCDR and Celebrity Chef Jerome Brown at our Opening Reception and Dinner. 

Guidelines for Opioid Prescription, Random Urine Drug Screen and Prescriber Behavior when Faced with THC Positivity

Abdullah Kutlar, M.D.
Introduction

David Thomas, Ph.D
The Opioid Epidemic

Samir Ballas, M.D.
The Impact of the Opioid Epidemic on the Management of Pain in Sickle Cell Disease

*Motor Coach Transportation will be provided from the Convention Center

Moderators
avatar for Abdullah Kutlar, M.D.

Abdullah Kutlar, M.D.

Director, Sickle Cell Center, Georgia Regents University

Speakers
avatar for Samir K. Ballas, M.D.

Samir K. Ballas, M.D.

Emeritus Professor of Medicine and Pediatrics at Thomas Jefferson University
Samir K. Ballas received his MD with distinction from the American University of Beirut-Lebanon in 1967. He completed his training in Hematology at Thomas Jefferson University in Philadelphia, Pennsylvania. He is board certified in Internal Medicine, Hematology, Blood Banking, Pa... Read More →
avatar for Thomas David, Ph.D.

Thomas David, Ph.D.

National Institute on Drug Abuse
After 12 years as a pain and opioid researcher, in 1995 Dr. Thomas joined the National Institute on Drug Abuse (NIDA) where he has managed much of NIDA’s pain and opioid research efforts.  In 2015, he joined DESPR’s Services Research Branch.  He currently is co-chair of the NIDA Prescription Opioids and Pain workgroup, which fosters pain and opioid research and education. He is also a founding member of the National Institutes of Health (NIH) Pain Consortium, which promotes and pain research across the NIH. He is also a member of the Department of Health and Human Services Behavioral Health Coordination Committee Prescription Opioids Subcommittee, National Pain Strategy working group on Provider Education, and the Interagency Pain Research Coordination... Read More →


Friday April 28, 2017 7:00pm - 9:30pm
Hugh's Catering 4351 NE 12th Terrace, Oakland Park, FL 33334
 
Saturday, April 29
 

7:15am

Registration
Saturday April 29, 2017 7:15am - 5:00pm
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

7:30am

Breakfast Meet the Experts
Health Services Research
Robert W. Gibson, PhD, MSOTR/L FAOTA
Professor
Director of Research
Department of Emergency Medicine
Medical College of Georgia

Mouse Models 

Dr. Cheryl Hillery, MD
Clinical Director, Hematology Director, Comprehensive Pediatric Sickle Cell Program
Professor of Pediatrics, University of Pittsburgh School of Medicine 


Saturday April 29, 2017 7:30am - 8:15am
315/316 South Lobby 3rd Floor

8:30am

Plenary II, 2017 Scientific Chair Welcome, Federal Agency and Speciality Society Sickle Cell Disease Updates
Moderators
avatar for Betty Pace, M.D. 2017 FSCDR Scientific Chair

Betty Pace, M.D. 2017 FSCDR Scientific Chair

Interim Division Chief, Division Pediatric Hematology/Oncology and Professor, Augusta University
2017 FSCDR Scientific Chair Dr. Betty Pace is a Professor, Francis J. Tedesco Distinguished Chair and Interim Chief of the Pediatric Hematology Oncology Division. Dr. Pace provides leadership for a National Institutes of Health-funded basic research laboratory, focused on studies related to globin gene regulation and the design of drugs to induce fetal hemoglobin to treat sickle cell disease. In 2010, Dr. Pace joined the faculty at Augusta University as Professor of Pediatrics with a joint appointment in the Department of Biochemistry and Molecular Biology. She maintains an active research laboratory and training program and is fully engaged as a member of the Augusta Sickle Cell Disease Research Center. She also provides leadership for a NHLBI-funded training program, Program to Increase Diversity for Individuals Engaged in Health Related Research (PRIDE) training over 65 junior faculty members across the US conducting hematology... Read More →

Speakers
avatar for W. Keith Hoots, M.D.

W. Keith Hoots, M.D.

Director of Blood Disease and Resources at the National Heart, Lung and Blood Institute (NHLBI) NIH National Blood and Heart Institue, National Institute of Health
W. Keith Hoots, M.D., is the director of the Division of Blood Diseases and Resources at the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH). In this role, Dr. Hoots plans and directs research and research training on the causes... Read More →
avatar for Enrico Novelli, M.D., MS

Enrico Novelli, M.D., MS

American Society of Hematology SCD Initiative, SCD Work Group Chair
Dr. Novelli is an Assistant Professor at the University of Pittsburgh and an expert in sickle cell disease. He received his fellowship training in Hematology/Oncology at the University of Pittsburgh Medical Center (UPMC). Dr. Novelli has served as Director of the UPMC Adult Sickle Cell Program since 2007. Dr... Read More →


Saturday April 29, 2017 8:30am - 9:45am
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

9:45am

A Parent's Perspective
Speakers
avatar for NeDina Brocks-Capla

NeDina Brocks-Capla

Founder, Sickle Cell Anemia Awareness
My name Is NeDina Brocks and I am the founder of Sickle Cell Anemia Awareness organization in San Francisco.  In June 2014 Sickle Cell Anemia Awareness (501c3) was created with a mission of awareness and advocacy.  After my son past away I felt a deep sense of responsibility to &ldquo... Read More →


Saturday April 29, 2017 9:45am - 10:00am
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

10:00am

Break
Saturday April 29, 2017 10:00am - 10:15am
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

10:14am

10:15am

Adult Care
Moderators
avatar for Lanetta Bronte, M.D., MPH, MSPH

Lanetta Bronte, M.D., MPH, MSPH

President and Founder, Foundation for Sickle Cell Disease Research

Speakers
avatar for Paul Braxon, Ph.D.

Paul Braxon, Ph.D.

Dr. Braxton earned his PhD from Barry University in Miami, Florida. He also earned his master’s degree in educational and organizational leadership from Barry University in Miami, Florida, and he earned his bachelor’s degree in psychology from Central State University located in Wilberforce, Ohio. Dr. Braxton has lived with Sickle Cell Disease SS genotype for 69 years. Outside of his research he participates in focus groups and support groups with patients and doctors as he has done throughout his teenage and adult years. His mission is to aid in improving the quality of life for people living with SCD. Dr... Read More →


Saturday April 29, 2017 10:15am - 12:15pm
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

10:15am

Innovative Approaches to Improve Medical Access and Standards of Care for Sickle Cell Disease

Susan Claster, MD, Center for Inherited Blood Disorders (CIBD), MLK Adult Sickle Cell Clinic, and Division of Hematology/Oncology, Department of Medicine, University of California, Irvine

Lisa Shook, MA, MCHES, Cancer and Blood Diseases Institute, Division of Hematology, Cincinnati Children’s Hospital Medical Center

Using a regional telementoring model to improve provider knowledge about sickle cell disease

Betty S. Pace, MD, Department of Pediatrics, Augusta University

Utilization of Telemedicine to Improve Access to Care for Individuals Living with Sickle Cell Disease in U.S. Southeast Region Rural Communities

Rosalyn Stewart MD, MS, MBA, Departments of Internal Medicine and Pediatrics, School of Nursing and Bloomberg School of Public Health, Johns Hopkins University School of Medicine

Interprofessional Collaboration: the multipronged approach for better outcomes


Moderators
LM

Lisa M. Shook, MA, MCHES, CCP

Division of Hematology at Cincinnati Children's Hospital Medical Center
Lisa M. Shook is an Assistant Professor of Pediatrics at Cincinnati Children’s Hospital Medical Center, and the Administrative Director of the Cincinnati Comprehensive Sickle Cell Center.  She has a Master’s degree in Health Education and is currently a doctoral student focused on health professions... Read More →

Speakers
avatar for Betty Pace, M.D. 2017 FSCDR Scientific Chair

Betty Pace, M.D. 2017 FSCDR Scientific Chair

Interim Division Chief, Division Pediatric Hematology/Oncology and Professor, Augusta University
2017 FSCDR Scientific Chair Dr. Betty Pace is a Professor, Francis J. Tedesco Distinguished Chair and Interim Chief of the Pediatric Hematology Oncology Division. Dr. Pace provides leadership for a National Institutes of Health-funded basic research laboratory, focused on studies related to globin gene regulation and the design of drugs to induce fetal hemoglobin to treat sickle cell disease. In 2010, Dr. Pace joined the faculty at Augusta University as Professor of Pediatrics with a joint appointment in the Department of Biochemistry and Molecular Biology. She maintains an active research laboratory and training program and is fully engaged as a member of the Augusta Sickle Cell Disease Research Center. She also provides leadership for a NHLBI-funded training program, Program to Increase Diversity for Individuals Engaged in Health Related Research (PRIDE) training over 65 junior faculty members across the US conducting hematology... Read More →
avatar for Rosalyn Stewart M.D., MS, MBA

Rosalyn Stewart M.D., MS, MBA

Associate Professor, Johns Hopkins University
Dr. Rosalyn W. Stewart has a Master’s degree in Biomedical Sciences and Preventive Medicine as well as a MBA. She is board certified in both internal medicine and pediatrics. Her major areas of interests include care coordination and interprofessional care. She an associate professor at Johns Hopkins University with joint appointments in the Departments of Internal Medicine and Pediatrics, School of Nursing and Bloomberg School of Public Health. She is a true leader in the development, improvement and delivery of care for individuals with health disparities. She coordinates quality improvement efforts geared toward refining health care services and improving the health status of targeted populations... Read More →
SC

Susan Claster, MD

An expert in the care of adults with hemoglobinopathies, Dr. Claster’s research interest is in health outcomes for sickle cell disease.  Board-certified in internal medicine and hematology, she specializes in non-malignant hematology, specifically the care of sickle cell and thalassemia patients. Dr. Claster has published numerous articles in peer review journals... Read More →


Saturday April 29, 2017 10:15am - 12:15pm
305 North Lobby 3rd Floor

10:15am

Pulmonary Complications: Emerging Concepts in Sickle Cell Lung Disease

Robyn T. Cohen, MD, Boston University School of Medicine
SCD:  All that Wheezes Isn’t Asthma 

Alan Lunt, PhD, King’s College London, School of Medicine 
Lung Function in Sickle Cell Disease: Physiological Observations from a UK Centre

Umapathy Siddaramappa, Augusta University 
Impaired Pulmonary Endothelial Barrier Function in Sickle Cell Mice: New Approach to Therapy

Elizabeth S. Klings, MD, Boston University School of Medicine
Sleep-Disordered Breathing and Intermittent Hypoxia As Modulators of Endothelial Function in Sickle Cell Disease 

Gregory J. Kato, MD, University of Pittsburgh School of Medicine
Role of Platelets and P-Selectin in Cell Adhesion and Pulmonary Vascular Disease

Question and Answer Session 


Moderators
avatar for Gregory J. Kato, M.D.

Gregory J. Kato, M.D.

Professor Of Medicine, University of Pittsburgh, Department of Hematology-Oncology; Heart, Lung, Blood, and Vascular Medicine Institute
Dr. Kato is the Director of the Adult Sickle Cell Center at the Pittsburgh Heart, Lung, Blood and Vascular Medicine Institute and Professor of Medicine at the University of Pittsburgh.  He attended George Washington University School of Medicine and Health Sciences, completed residency in pediatrics at... Read More →
avatar for Elizabeth Klings, M.D.

Elizabeth Klings, M.D.

Associate Professor of Medicine and the Director of the Center for Excellence in Sickle Cell Disease, Boston University School of Medicine
Dr. Elizabeth Klings is an Associate Professor of Medicine and the Director of the Center for Excellence in Sickle Cell Disease, which cares for 200 pediatric and 250 adult patients, at Boston University School of Medicine.  She received her MD degree from New York University and completed her training in Internal Medicine, Pulmonary and Critical Care at Boston City Hospital/Boston Medical Center/Boston University School of Medicine. She joined the faculty at Boston University School of Medicine in July... Read More →

Speakers
avatar for Robyn T. Cohen, M.D.

Robyn T. Cohen, M.D.

Director, Pediatric Pulmonary and Allergy, Boston Medical Center
Dr. Robyn T. Cohen is the Director of Pediatric Pulmonary and Allergy at Boston Medical Center and an Assistant Professor of Pediatrics at Boston University School of Medicine. She went to medical school at the Albert Einstein College of Medicine and completed her residency in Pediatrics and Social Medicine at the... Read More →
avatar for Umapathy Siddaramappa, Ph.D.

Umapathy Siddaramappa, Ph.D.

Assistant Professor of Medicine, Augusta University
Dr. Umapathy N Siddaramappa is an Assistant Professor of the Department of Medicine-Sickle Cell Center at Augusta University (Augusta, Georgia). He received his PhD in Biochemistry from Bangalore University (Bangalore, India) and completed postdoctoral training from Augusta University. His overall research focuses on the mechanisms of pulmonary endothelial barrier protection and repair in acute lung injury and contributed over 10 papers and book chapters on acute lung injury research. He received the National Heart Lung and Blood Institute funded Hemoglobinopathy Translational Research Skills Core (HTRC) trainee award to develop... Read More →
avatar for Alan Lunt, Ph.D.

Alan Lunt, Ph.D.

Chief Paediatric Respiratory Physiologist and Postdoctoral Research Fellow, King's College Hospital, Department of Child Health King's College London, School of Medicine
Chief Paediatric Respiratory Physiologist and Postdoctoral Research Fellow at King's College Hospital NHS Foundation Trust, London UK. Completed PhD under Professor Anne Greenough at King’s College London, Division of Asthma, Allergy and Lung Biology on “Development of pulmonary function abnormalities in sickle cell... Read More →



Saturday April 29, 2017 10:15am - 12:15pm
304 North Lobby 3rd Floor Fort Lauderdale Convention Center

10:15am

Social Media, A Resource for SCD Support, Education and Research

Charles Jonassaint, PhD, Assistant Professor, University of Pittsburgh
What are they talking about? Sickle cell community presence on social media

Cassandra Trimnell, Executive Director & Founder, Sickle Cell 101
How Sickle Cell 101 supports the SCD community via social media

Keith Quirolo, MD, Medical Director, Sickle Cell 101
Ask Dr. Q: a medical information resource for patients with SCD via social media

Aisha L. Walker, PhD, MPH, Research Assistant Professor, University of Pittsburgh
Using social media to identify patient-oriented barriers to sickle cell therapies

Keyang Zheng, Graduate Student, University of Pittsburgh
Shared deliberation in Facebook support groups for sickle cell patients and caregivers         

Q&A and Group Discussion


Moderators
avatar for Charles Jonassiant, Ph.D., MHS

Charles Jonassiant, Ph.D., MHS

Assistant Professor of Medicine, University of Pittsburgh
Dr. Charles Jonassaint is a practicing clinical health psychologist with an MHS in cardiovascular epidemiology focusing on behavioral medicine and health services research. He has clinical expertise in chronic disease self-management and cognitive behavioral therapy intervention... Read More →
avatar for Alisha L. Walker, Ph.D., MPH

Alisha L. Walker, Ph.D., MPH

Research Assistant Professor, University of Pittsburgh.
Dr. Walker is a Research Assistant Professor and Sickle Cell Scholar in the Vascular Medicine Institute at University of Pittsburgh. She received her PhD in Cell Biology and Anatomy from Augusta University in Augusta, GA (formerly known as Medical College of Georgia). She conducted her postdoctoral training at St. Jude... Read More →

Speakers
avatar for Keith Quirolo, M.D.

Keith Quirolo, M.D.

Dr. Quirolo is an expert in sickle cell disease and thalassemia who was formally the Director of the Pediatric Sickle Cell Program and the Apheresis Program at UCSF Benioff’s Children’s Hospital Oakland. As a recently retired pediatrician he has made himself available to answer your toughest sickle cell related... Read More →
avatar for Cassandra Trimnell

Cassandra Trimnell

President & Founder, Sickle Cell 101
As founder and executive director of Sickle Cell 101, Cassandra is an active educator and advocate within the sickle cell community. Her passion for sickle cell stems directly from her living with sickle cell disease, hgb SS. Cassandra received a B.A. in Global Studies: Social, P... Read More →
avatar for Keyang Zheng

Keyang Zheng

Keyang Zheng is a Graduate student at the Information Science program at the School of Computing and Information. Under supervision of Dr. Rosta Farzan, he has been conducting research on developing computational methods to increase our understanding of the dynamics of online health support groups and how members of such group influence and get influenced by each other. Keyang is a dedicated researcher aiming to continue his doctoral degree in the field of Social Computing and Information Sciences. | Dr... Read More →



Saturday April 29, 2017 10:15am - 12:15pm
209/210 Prefunction 2nd Floor

12:15pm

Lunch Buffet
Saturday April 29, 2017 12:15pm - 1:45pm
315/316 South Lobby 3rd Floor

12:15pm

NIH Focus Groups for Parents of Patients
Parents of Patients are invited to join NIH for a focus group. 
NIH Wants your Thoughts on Gene - Editing.  A new gene-editing technique is taking is taking the scientific c research and healthcare community by storm with the promise it holds to cure and ease the burden of debilitating diseases.
Space is limited!!

FOR MORE INFORMATION AND/OR TO PARTICIPATE IN THIS STUDY, EMAIL SCDVOICES@MAIL.NIH.GOV | OR CALL 301-496-4590

Saturday April 29, 2017 12:15pm - 1:45pm
317 South Lobby 3rd Floor Fort Lauderdale Convention Center

1:50pm

Break
Saturday April 29, 2017 1:50pm - 2:00pm
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

2:00pm

Keynote Speaker, Simon Dyson, PhD, Sickle Cell and Stigma: Beyond Perfection and Imperfection
Sickle Cell and Stigma: Beyond Perfection and Imperfection

Speakers
avatar for Simon Dyson, Ph.D.

Simon Dyson, Ph.D.

Professor of Applied Sociology, Director of the Unit for the Social Study of Thalassaemia and Sickle Cell, De Montfort University, UK
Simon Dyson is Professor of Applied Sociology and is Director of the Unit for the Social Study of Thalassaemia and Sickle Cell at De Montfort University, UK. His research interests include all social aspects of sickle cell and thalassaemia. His books include Ethnicity and Screeni... Read More →


Saturday April 29, 2017 2:00pm - 2:45pm
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

2:45pm

Break
Saturday April 29, 2017 2:45pm - 3:00pm
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

3:00pm

Plenary Session III - Top Abstracts
JSCDH-D-17-00019, Gregory J. Kato, MD
Heme Promotes Pulmonary Hypertension in SCD by Inducing Secretion of Placenta Growth Factor From Erythroblasts via Oxidant Response Transcription Factors

JSCDH-D-17-00036, Yvonne Carroll, RN, JD
Visual Explorer: Using Pictures to Facilitate Dialogue on Complex Sickle Cell Disease Issues

JSCDH-D-17-00018, Nicholas Clarke, Ph.D.
Changes in Exploratory Biomarkers in a PHASE 1B, Randomized, Double-Blinded, Placebo Controlled Study of PF-04447943 in patients with Stable Sickle Cell Disease

Speakers
avatar for Yvonne M. Carroll, RN, JD

Yvonne M. Carroll, RN, JD

Director of Patient Services, Hematology, St. Jude Children’s Research Hospital
Yvonne M. Carroll, RN, JD is the Director of Patient Services in the Department of Hematology at St. Jude Children’s Research Hospital.  Yvonne graduated with a Bachelors of Nursing Degree from the University of Tennessee and a Law degree from the University of Cincinnati. She joined SJCRH in 1999 in the Department of Hematology and served in several positions before becoming the Director of Patient... Read More →
avatar for Gregory J. Kato, M.D.

Gregory J. Kato, M.D.

Professor Of Medicine, University of Pittsburgh, Department of Hematology-Oncology; Heart, Lung, Blood, and Vascular Medicine Institute
Dr. Kato is the Director of the Adult Sickle Cell Center at the Pittsburgh Heart, Lung, Blood and Vascular Medicine Institute and Professor of Medicine at the University of Pittsburgh.  He attended George Washington University School of Medicine and Health Sciences, completed residency in pediatrics at... Read More →
avatar for Nick Clarke, PhD

Nick Clarke, PhD

Senior Director, Pfizer
Nick has been the Project Team Leader for the Phosphodiesterase Type 9 inhibitor for the prophylactic treatment of sickle cell disease since the idea of repositioning the compound for a rare disease indication was identified. Nick is also leading the Pfizer Rare Disease Consortium in the UK which is a joint undertaking of Pfizer and six leading UK universities (University of Cambridge, Imperial College... Read More →


Saturday April 29, 2017 3:00pm - 3:45pm
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

3:45pm

Break
Saturday April 29, 2017 3:45pm - 4:00pm
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

3:59pm

Educational Workshops II
Saturday April 29, 2017 3:59pm - 5:59pm
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

4:00pm

Biomarkers and Surrogate Endpoint: Can Novel Biomarkers Clarify Sickle Cell Disease Status and Effects of Disease-Modifying Therapies? Current Challenges - Futures Opportunities

Session Objective

  1. Learn the principles of important emerging functional biomarkers and their applications to sickle cell disease.
  2. Learn how novel functional biomarkers, electronic patient reported outcome platforms, and actigraphy can be applied to better understand the relationship between cellular-level biology of SCD, clinical manifestations, and patient experience.  
  3. Learn the pitfalls of incorporating novel biomarkers and surrogate endpoints into clinical trials of SCD modifying agents.
  4. Understand the perspective of regulatory agencies in evaluating biomarkers and surrogate endpoints. 

Introduction
4:00pm – 4:05pm
Patrick Hines, MD/PhD
Associate Professor of Pediatric Critical Care Medicine
Children’s Hospital of Michigan
Research Associate, Department of Physiology, WSU School of Medicine
Functional Fluidics, Founder and CEO

“ELIPSIS: a natural history study to evaluate longitudinal changes in ePRO, actigraphy, and biomarkers that describe the patient-centered VOC experience in SCD”

David Beidler, PhD
Director, Translational Sciences, Rare Diseases Research Unit
Pfizer

“Clinical application of standardized microfluidic flow-based assays to assess adhesive properties of sickle blood.” 

Patrick Hines, MD/PhD
Associate Professor of Pediatric Critical Care Medicine
Children’s Hospital of Michigan
Research Associate, Department of Physiology, WSU School of Medicine
Functional Fluidics, Founder and CEO

“Novel assays of platelet and WBC function to assess SCD acuity: Role of Platelet monocyte aggregates and platelet neutrophil aggregates”

Larry Frelinger, PhD
Assistant Professor of Pediatrics, Harvard Medical School
Associate Director, Center for Platelet Research Studies
Research Associate in Medicine, Division of Hematology/Oncology
Boston Children's Hospital/Dana-Farber Cancer Institute

“Coagulation markers and soluble plasma markers in SCD”

Debra Pittman, PhD
Research Fellow
Hematology Lead
Pfizer Rare Disease Research Unit

“Implementation of novel surrogate endpoints in clinical studies of SCD Modifying Therapy”

Michael Callaghan, MD
Associate Professor of Pediatric Hematology/Oncology
WSU School of Medicine
Children’s Hospital of Michigan

“Biomarkers as Surrogate Endpoints in Clinical Studies of SCD Modifying Therapy:  The Global Blood Experience”

Josh Lerner, MD
Chief Medical Officer
Global Blood Therapeutics

Panel Question and Answer Session


Moderators
avatar for Patrick Hines, M.D., Ph.D.

Patrick Hines, M.D., Ph.D.

Founder, Functional Fluidics, LLC
Dr. Patrick Charles Hines is an associate professor of pediatric critical care medicine at the Children’s Hospital of Michigan, associate in the Department of Physiology at Wayne State University School of Medicine, and founder of Functional Fluidics. Dr. Hines has spent over 15 years investigating the mechanisms regulating microvascular blood flow in sickle cell disease, including sickle erythrocyte adhesion, leukocyte rolling, and platelet... Read More →

Speakers
avatar for Michael U. Callaghan, M.D.

Michael U. Callaghan, M.D.

Director, Children’s Hospital of Michigan Sickle Cell Center
Assistant Professor of Pediatric Hematology                                   | Children’s Hospital of Michigan                                                          | Wayne State University of Medicine... Read More →
avatar for Josh Lehrer, M.D.

Josh Lehrer, M.D.

Vice President, Clinical Development, Global Blood Therapeutics
Dr. Lehrer is a cardiologist, physician scientist and biotechnology executive. He is currently Vice President, Clinical Development at Global Blood Therapeutics, where he has overseen the clinical development program strategy and execution for GBT440, bringing this molecule through early stage studies into a pivotal Phase 3 program in Sickle Cell Disease. Prior to GBT, Dr. Lehrer led clinical development programs through proof of concept at Genentech in multiple indications and held key roles in business development and overseeing cardiovascular safety. Dr. Lehrer has served as adjunct faculty in the Division of Cardiology at Stanford School of... Read More →
avatar for Larry Frelinger, Ph.D.

Larry Frelinger, Ph.D.

Staff Scientist, Boston Children’s Hospital
Dr. Andrew L. “Larry” Frelinger III is Assistant Professor of Pediatrics at Harvard Medical School, Associate Director of the Center for Platelet Research Studies, Staff Scientist at Boston Children’s Hospital, and has a joint appointment at the Dana-Farber Cancer Institute. Dr. Frelinger is also an editor of the journal Platelets and co-chair of the International Society on Thrombosis and Haemostasis Scientific and Standardization Committee subcommittee on Platelet Physiology. Dr... Read More →
avatar for David Beidler, PhD

David Beidler, PhD

Director, Translational Sciences, Pfizer Global Research and Development - Rare Diseases Resarch Unit
As the Translational Sciences Lead for the phosphodiesterase type 9 inhibitor project, David contributed to the development, implementation, and analysis of pharmacodynamic biomarkers in the recent phase 1b study in stable sickle cell disease subjects.  David has over 17 years of pharmaceutical industry experience with biomarker/translational pharmacology strategy and clinical operations that span preclinical animal models, natural history/methodology studies, and early (Phase 1/2) clinical... Read More →
avatar for Debra Pittman, PhD

Debra Pittman, PhD

Hematology Lead Research Fellow, Rare Disease Research Unit Pfizer
Debra is currently a Research Fellow and Hematology Lead in the Rare Disease Research Unit at Pfizer. Her early training was in molecular biology, but throughout her career she has worked on models of disease and the translation of nonclinical studies into early clinical... Read More →


Saturday April 29, 2017 4:00pm - 6:00pm
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

4:00pm

Leg Ulcers: Leveraging Big Data to Better Understand Sickle Cell Ulcers
Supportive care and patient’s related outcomes

Moderators
avatar for Caterina Minniti, M.D.

Caterina Minniti, M.D.

Director of Sickle Cell Center, Sickle Cell Center Division of Hematology, Department of Oncology Montefiore Medical Center
Dr. Minniti is Professor of Clinical Medicine and Pediatrics at Einstein College of Medicine. She is the Director of the Sickle Cell Center for Adults at Montefiore Hospital, whose mission is to provide exceptional, seamless, comprehensive, compassionate and individualized care, education, counseling, and research for people living with sickle cell disease. Dr. Minniti is a clinical trial specialist and a translational researcher who believes that the best way to provide care for SCD patients is on a continuum, from birth to adulthood. The focus of her research is in understanding mechanisms that lead to end organ damage in order to identify early biomarkers and targeted therapies. Her interests have spanned from stroke to pulmonary hypertension and, most recently, she has focused on leg ulcers as they represent a window into the vasculopathy in... Read More →

Speakers
avatar for Vence L. Bonham, J.D.

Vence L. Bonham, J.D.

Senior Advisor to the Director on Genomics and Health Disparities, National Institutes of Health
Vence L. Bonham, Jr.  J.D. is an associate investigator in the Social and Behavioral Research Branch of the Division of Intramural Research at the National Human Genome Research Institute and Senior Advisor to the Director of the National Human Genome Research Institute on Genomics and Health... Read More →
avatar for Andrew Campbell, M.D.

Andrew Campbell, M.D.

Director, Pediatric Comprehensive Hemoglobinopathies Program Assistant Professor Department of Pediatrics Division of Pediatric Hematology/Oncology Co-Director, Minority International Research Training Program Center for Human Growth and Development, University of Michigan
Dr. Campbell is a graduate of Case Western Reserve School of Medicine completed his residency training @ Harvard Affiliated Massachusetts General Hospital in Boston followed by Pediatric Hematology/Oncology Fellowship @ Northwestern University. Currently he directs the Comprehensive Pediatric Hemoglobinopathies Program which includes the Pediatric Sickle Cell and Thalassemia clinic @ the University of... Read More →
avatar for Gregory J. Kato, M.D.

Gregory J. Kato, M.D.

Professor Of Medicine, University of Pittsburgh, Department of Hematology-Oncology; Heart, Lung, Blood, and Vascular Medicine Institute
Dr. Kato is the Director of the Adult Sickle Cell Center at the Pittsburgh Heart, Lung, Blood and Vascular Medicine Institute and Professor of Medicine at the University of Pittsburgh.  He attended George Washington University School of Medicine and Health Sciences, completed residency in pediatrics at... Read More →
avatar for Hanna Gordon, Ph.D.

Hanna Gordon, Ph.D.

Director of Research and Informatics, Healogics Inc. Bioinformatics Analyst, Healogics, Inc.
Hanna Gordon, PhD is the Director of Research and Informatics at Healogics Inc. Dr. Gordon is committed to improving patient outcomes and health care delivery through data driven discovery and quantitative analysis. Her research is driven by a belief in the transformative power of data to meet the needs of an evolving health system. She has over seven years of experience in health informatics including work in population health, health policy, and private industry. She received her PhD from Florida State... Read More →



Saturday April 29, 2017 4:00pm - 6:00pm
203/204 Prefunction 2nd Floor

4:00pm

Neurocognitive Evaluation and the Need for Accommodations

Bonnie Abrson, PsyD., ABN
Clinical Neuropsychologist

Objectives:

1. Participants will  become familiar with the neuropsychological  deficits of adults and children with sickle cell disease based on neuropsychological evaluations.

2. Participants will become aware of the accommodations needed for children with sickle cell disease in school.

3. Participants will be provided with four cases of children with this condition in terms of  similarities and differences and evaluation results.


Speakers
BA

Bonnie Aberson, PSY.D., ABN, ABSNP

Clinical Neuropsychologist


Saturday April 29, 2017 4:00pm - 6:00pm
317 South Lobby 3rd Floor Fort Lauderdale Convention Center

4:00pm

Nursing Matters

Yvonne M. Carroll, RN, JD: Moderator
Dr. Ken Bridges : (Global Blood Therapeutics  - GBT440 – oral polymerization inhibitor)
Dr. Rosa Real: (Prolong Pharmaceuticals - Sanguinate™ - bovine blood substitute)
Dr. Gary Fortin: (Bluebird Bio  - gene therapy)
Dr. Fernando Tricta: (Apopharma  -  Ferriprox™ - oral chelator)


Moderators
avatar for Yvonne M. Carroll, RN, JD

Yvonne M. Carroll, RN, JD

Director of Patient Services, Hematology, St. Jude Children’s Research Hospital
Yvonne M. Carroll, RN, JD is the Director of Patient Services in the Department of Hematology at St. Jude Children’s Research Hospital.  Yvonne graduated with a Bachelors of Nursing Degree from the University of Tennessee and a Law degree from the University of Cincinnati. She joined SJCRH in 1999 in the Department of Hematology and served in several positions before becoming the Director of Patient... Read More →

Speakers
avatar for Fernando Tricta, M.D.

Fernando Tricta, M.D.

Vice-President, Medical Affairs, ApoPharma, Inc.
Dr. Fernando Tricta, is a pediatric hematologist/oncologist, with a particular interest in hemoglobinopathies and iron metabolism. He was head of the Hemoglobinopathies Program at Pediatric Hem/Onc Research Center at the University of Campinas, Brazil, and worked at the University of Turin... Read More →
avatar for Kenneth R. Bridges, M.D.

Kenneth R. Bridges, M.D.

Vice President, Medical Affairs, Global Blood Therapeutics
Dr. Kenneth R. Bridges received the MD degree from Harvard Medical School, and subsequently trained in internal medicine and hematology in Boston, at Massachusetts General and Brigham and Women’s Hospitals, respectively. Following medical subspecialty training, Dr. Bridges worked on the biology of cellular iron metabolism for three years at the National Institutes of Health in Bethesda, Maryland. Dr. Bridges returned to Harvard as a member of the Hematology Division at Brigham and... Read More →
avatar for Rosa Real, M.D.

Rosa Real, M.D.

Head of North American Clinical Operations, Prolong Pharmaceuticals
Dr. Rosa Real is currently the Head of North American Clinical Operations at Prolong Pharmaceuticals. In this role, she oversees the clinical development and execution of clinical trials across Prolong’s portfolio of products, with special interest in the Sickle Cell Disease protocol titled... Read More →
avatar for Gary Fortin, Ph.D.

Gary Fortin, Ph.D.

Senior Director, Medical Affairs, Bluebird Bio
As Senior Director, Medical Affairs at bluebird bio, Gary Fortin, PhD, oversees the development and execution of global medical affairs strategy across the company’s gene therapy portfolio with products in development for childhood CNS disease and hemoglobinopathies.   Prior to joining bluebird in September 2015, Gary held various pharmaceutical and biotechnology positions supporting both development-stage and commercialized products in nephrology, neurology, and benign and malignant... Read More →


Saturday April 29, 2017 4:00pm - 6:00pm
305 North Lobby 3rd Floor

4:00pm

Pain Treatment
Moderators
CD

Carlton Dampier, M.D. CPI

Professor of Pediatrics, Director, Ethics and Regulatory Program Atlanta Clinical and Translational Science Institute, Chair, Childrens Healthcare of Atlanta IRB, Vice Chair, Emory University IRB, Emory University School of Medicine

Speakers
avatar for Wally Smith, M.D.

Wally Smith, M.D.

Florence Neal Cooper Smith Professor of Sickle Cell Disease Vice Chair for Research Division of General Internal Medicine, Virginia Commonwealth University
Wally R. Smith, MD, Florence Neal Cooper Smith Professor of Sickle Cell Disease at Virginia Commonwealth University, is an adult sickle cell provider and clinical researcher.  He is the Principal Investigator (PI) of Start Healing in Patients with Hydroxyurea (SHiP HU), and the P... Read More →
avatar for Deepika Darbari, M.D.

Deepika Darbari, M.D.

Attending Physician, Division of Hematology, George Washington University School of Medicine and Health Sciences Washingon, D.C.
Dr. Darbari is  a board certified Pediatric Hematologist-Oncologist at the Children’s National  | Medical Center and Associate Professor of Pediatrics at the George Washington University in Washington DC. Sickle cell team at Children’s National provides comprehensive care to one... Read More →
avatar for Soumitri Sil Ph.D.

Soumitri Sil Ph.D.

Assistant Professor, Department of Pediatrics, Emory University School of Medicine
Soumitri Sil, Ph.D., is an Assistant Professor in the Department of Pediatrics at Emory University School of Medicine and the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta. Dr. Sil is a clinical psychologist with specialized training in pediatric psychology. She has research and clinical expertise in pediatric pain management focused on the development and evaluation of behavioral interventions to promote the health and functioning of children and adolescents with complex chronic pain conditions. Dr... Read More →



Saturday April 29, 2017 4:00pm - 6:00pm
304 North Lobby 3rd Floor Fort Lauderdale Convention Center

4:00pm

Transition from Pediatric to Adult Care? What Makes it Work

Moderators: E. Leila Jerome Clay, MD, MCTS and Janet Hess, DrPH

E. Leila Jerome Clay, MD, MTCS
Janet Hess, DrPH
Linda Starnes
Gary Link, MS, HS-BCP
Patient Perspective on Transition- Dominique Goodson & Jew-EL Darbone
Panel Discussion / Questions and Answers


Moderators
avatar for Janet Hess, DrPH

Janet Hess, DrPH

Assistant Professor, Department of Pediatrics, Adolescent Medicine, University of South Florida
Janet Hess, DrPH, is Assistant Professor in the Department of Pediatrics, Adolescent Medicine, at the University of South Florida. She is the statewide Project Director for Florida Health and Transition Services (FloridaHATS), a health care transition (HCT) improvement initiative ... Read More →
avatar for E. Leila Jerome Clay, M.D. MCTS

E. Leila Jerome Clay, M.D. MCTS

Director, Sickle Cell Disease Transition, Assistant Professor of Pediatrics, Section of Hematology/Oncology, Augusta University at the Medical College of Georgia
Dr. Clay is Assistant Professor  of Pediatrics, Section of Hematology/Oncology with a joint appointment as an Assistant Professor in the Department of Medicine, Section of Hematology/Oncology at Augusta University at the Medical College of Georgia. Dr. Clay received her Bachelor&rsquo... Read More →

Speakers
avatar for Jew-EL Darbone

Jew-EL Darbone

Jew-EL Darbone is a 28yr old sickle cell warrior dedicated to sickle cell advocacy and empowerment. She is one of the founders and CFO of   501c3 Nonprofit organization #Boldlipsforsicklecell. #Boldlipsforsicklecell started as a social media awareness challenge for sickle cell di... Read More →
avatar for Dominique Goodson

Dominique Goodson

Dominique Goodson is a dedicated sickle cell advocate that lives with sickle cell anemia. She was born and raised in Newark, NJ. After graduating from Rutgers University with a degree in Sociology and Anthropology, and receiving two citations from the former Governor of NJ, Governor Jon Corzine, Dominique began working as a research assistant to different professor at different universities. During one of her breaks between research projects, she worked as a Business Development Specialist at Eagle Detective Agency, where she worked to gain numerous contracts including the NFL Super Bowl NY/NJ 2014 contract. Dominique resigned from Eagle Detective Agency in 2014, to focus on her passions writing and advocating for Sickle Cell Anemia. Dominique serves as a lead advisor for the Young Adult Sickle Cell Alliance and she works with many other Sickle Cell Community Based Organizations. Dominique is dedicated to helping patients and caregivers. She always says... Read More →


Saturday April 29, 2017 4:00pm - 6:00pm
209/210 North Lobby 3rd Floor

6:15pm

Bus Departs for Hugh's Catering
Saturday April 29, 2017 6:15pm - 6:30pm
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

6:30pm

Apopharma Dinner Inviation Only
Saturday April 29, 2017 6:30pm - 8:30pm
301/302 North Lobby 3rd Floor Fort Lauderdale Convention Center

7:00pm

FSCDR's Patient Advocate Dinner Roundtable
Talk by Lanetta Bronté , M.D., MPH, MSPH

Patient Co-Chair, Paul Braxton, Ph.D 

Speakers
avatar for Lanetta Bronte, M.D., MPH, MSPH

Lanetta Bronte, M.D., MPH, MSPH

President and Founder, Foundation for Sickle Cell Disease Research
avatar for Paul Braxon, Ph.D.

Paul Braxon, Ph.D.

Dr. Braxton earned his PhD from Barry University in Miami, Florida. He also earned his master’s degree in educational and organizational leadership from Barry University in Miami, Florida, and he earned his bachelor’s degree in psychology from Central State University located in Wilberforce, Ohio. Dr. Braxton has lived with Sickle Cell Disease SS genotype for 69 years. Outside of his research he participates in focus groups and support groups with patients and doctors as he has done throughout his teenage and adult years. His mission is to aid in improving the quality of life for people living with SCD. Dr... Read More →


Saturday April 29, 2017 7:00pm - 9:00pm
Hugh's Catering 4351 NE 12th Terrace, Oakland Park, FL 33334
 
Sunday, April 30
 

7:00am

NIH Focus Groups for Health Care Providers
Health Care Providers are invited to join NIH for a focus group.
NIH Wants your Thoughts on Gene - Editing. 
 A new gene-editing technique is taking is taking the scientific c research and healthcare community by storm with the promise it holds to cure and ease the burden of debilitating diseases.
Space is limited!!
FOR MORE INFORMATION AND/OR TO PARTICIPATE IN THIS STUDY, EMAIL SCDVOICES@MAIL.NIH.GOV | OR CALL 301-496-4590
 

Moderators
avatar for Vence L. Bonham, J.D.

Vence L. Bonham, J.D.

Senior Advisor to the Director on Genomics and Health Disparities, National Institutes of Health
Vence L. Bonham, Jr.  J.D. is an associate investigator in the Social and Behavioral Research Branch of the Division of Intramural Research at the National Human Genome Research Institute and Senior Advisor to the Director of the National Human Genome Research Institute on Genomics and Health... Read More →

Sunday April 30, 2017 7:00am - 8:30am
317 South Lobby 3rd Floor Fort Lauderdale Convention Center

7:30am

Breakfast Meet the Experts II
Stem Cell Transplant
Mark Walters, M.D
Jordan Family Director, Blood and Marrow Transplant Program 
UCSF Benioff Children's Hospital, Oakland 

Basic Science
Osheiza Abdulmalik, DVM
Division of Hematology,
The Children's Hospital of Philadelphia
Philadelphia, PA 19104

Sunday April 30, 2017 7:30am - 8:30am
315/316 South Lobby 3rd Floor

7:30am

Registration
Sunday April 30, 2017 7:30am - 2:00pm
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

8:30am

Break
Sunday April 30, 2017 8:30am - 8:45am
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

8:45am

Plenary Session IV Keynote Speaker, Kenneth I. Ataga, M.D.
Kenneth I. Ataga, MD Professor of Medicine
Director, UNC Comprehensive Sickle Cell Program
Division of Hematology/Oncology
University of North Carolina at Chapel Hill 

Pharmacotherapy for Sickle Cell Disease – More work yet to be done 



Moderators
avatar for Kenneth I. Ataga, M.D.

Kenneth I. Ataga, M.D.

Professor of Medicine Director - Comprehensive Sickle Cell Program, University of North Carolina, Chapel Hill

Sunday April 30, 2017 8:45am - 9:30am
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

9:30am

EHRA Investigators
Speakers
avatar for W. Keith Hoots, M.D.

W. Keith Hoots, M.D.

Director of Blood Disease and Resources at the National Heart, Lung and Blood Institute (NHLBI) NIH National Blood and Heart Institue, National Institute of Health
W. Keith Hoots, M.D., is the director of the Division of Blood Diseases and Resources at the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH). In this role, Dr. Hoots plans and directs research and research training on the causes... Read More →
avatar for Abdullah Kutlar, M.D.

Abdullah Kutlar, M.D.

Director, Sickle Cell Center, Georgia Regents University
avatar for Kalpna Gupta, Ph.D.

Kalpna Gupta, Ph.D.

Professor Of Medicine, Vascular Biology Center, Division of Hematology, Oncology and Transplantation, University Of Minnesota
Department of Medicine Co-leader, Tumor Microenvironment Program
 Masonic Cancer Center Co-leader, Molecular and Cellular Engineering Program Institute for Engineering in Medicine


Sunday April 30, 2017 9:30am - 10:30am
Floridian Ballroom A & B 3rd Floor Fort Lauderdale Convention Center

10:30am

Break
Sunday April 30, 2017 10:30am - 11:00am
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

11:00am

Abstract Breakout Sessions I Basic Science
JSCDH-D-17-00012, Jennell White, Ph.D.
Establishment of Steady State Adhesion Indices in Sickle Cell disease: Clinical Application of a Standardized Adhesion Bioassay    
 
JSCDH-D-17-00033, Andrew Campbell, M.D. 
Increased Expression of Cellular Stress Protein,α-SYNUCLEIN(SNCA) within Normoxic and Hypoxic Brains of SCD Mice: Implications for Neurocognitive Dysfunction in Sickle Cell Disease Patients

JSCDH-D-17-00047, Angela Rivers, M.D., Ph.D.
Inhibition of LSD1 improve RBC survival by reducing mitochondrial retention and associated ROS levels in the red blood cells of a mouse model of sickle cell disease

JSCDH-D-17-00004, Nnenna R. Ukachi, M.D.
Effects of Transfusions and Hydroxyurea on Pulmonary Function Test in Children with Sickle Cell Anemia

Moderators
avatar for Osheiza Abdulmalik, Ph.D.

Osheiza Abdulmalik, Ph.D.

Research Associate II, Rivella Laboratory, The Children's Hospital of Philadelphia, Research Institute
Dr. Abdulmalik’s research interests broadly encompass the hemoglobinopathies and red blood cell disorders, with particular focus on sickle cell disease and beta-thalassemia. Though both disorders are consequences of simple genetic mutations, the implications of these mutations are inherently complex, and include significant morbidities, lifelong challenges, reduced quality of life, and early mortality in patients; as well as substantial healthcare burden on families, caregivers, and society in general. Dr... Read More →

Speakers
avatar for Andrew Campbell, M.D.

Andrew Campbell, M.D.

Director, Pediatric Comprehensive Hemoglobinopathies Program Assistant Professor Department of Pediatrics Division of Pediatric Hematology/Oncology Co-Director, Minority International Research Training Program Center for Human Growth and Development, University of Michigan
Dr. Campbell is a graduate of Case Western Reserve School of Medicine completed his residency training @ Harvard Affiliated Massachusetts General Hospital in Boston followed by Pediatric Hematology/Oncology Fellowship @ Northwestern University. Currently he directs the Comprehensive Pediatric Hemoglobinopathies Program which includes the Pediatric Sickle Cell and Thalassemia clinic @ the University of... Read More →
avatar for Nnenna R. Ukachi, M.D.

Nnenna R. Ukachi, M.D.

Cohen Children’s Medical Center of New York
Dr Nnenna Ukachi is a final year fellow in Pediatric Hematology Oncology and Stem Cell Transplantation with clinical and research focus in sickle cell disease. She is completing her fellowship at the Cohen Children’s Medical Center of New York. Dr Ukachi’s interest in sickle cell... Read More →
avatar for Angela Rivers, Ph.D.

Angela Rivers, Ph.D.

Director of the Sickle Cell Transition Adolescent-Adult Readiness Clinic (STAR) at the University of Illinois, Chicago
Dr. Angela Rivers is currently the Director of the Sickle Cell Transition Adolescent-Adult Readiness Clinic (STAR) at the University of Illinois, Chicago. Her clinical focus is the development of new models of health care delivery for adolescents and young adult patients with sic... Read More →
avatar for Jennell White, Ph.D.

Jennell White, Ph.D.

Post-Doctoral Research Fellow, Wayne State University’s School of Medicine
Dr. Jennell White is a post-doctoral research fellow in the lab of Dr. Patrick Hines at Wayne State University’s School of Medicine (WSU-SOM) in the Department of Pediatrics. Dr. White’s research focuses on mechanisms regulating sickle erythrocyte adhesive interactions during physiologic flow conditions... Read More →


Sunday April 30, 2017 11:00am - 12:30pm
304 North Lobby 3rd Floor Fort Lauderdale Convention Center

11:00am

Abstract Breakout Sessions I Health Services Research
JSCDH-D-17-00042, Angela Rivers, Ph.D.
Our Hands, Our Health! A Promising Group Healthcare Model for Sickle Cell Disease and Readiness for Transition

JSCDH-D-17-00037, Steven Reader, Ph.D.
Caregiver perspectives on family psychosocial risk and adaptive coping strategies in pediatric Sickle Cell Disease: informing the adaptation of the Psychosocial Assessment Tool (PAT).

JSCDH-D-17-00011, J. Naylor Brownell, M.D.
Vitamin A Supplementation Associated with Improved RBC Indices and Fetal Hemoglobin in Subjects with Hgb SS Disease

JSCDH-D-17-00031, Samir K. Ballas, M.D.
Patients with sickle cell disease who use illegal drugs have increased frequency of vaso-occlusive crises that required hospital admission

JSCDH-D-17-00045, Deepak Choudhary​, MBBS, MD, MRCPCH​
Vitamin D Deficiency  in Sickle Cell Disease: The Role in the Incidence of Vaso-occlusive Crisis, Hospitalization Rates and Length of Stay.

JSCDH-D-17-00003, Valentine Brousse, M.D.
Assessment of Hematological Date in a Cohort of European Children with Sickle Cell Disease (SCD) Treated with Hydroxyurea (HU) : Can Today European Centers Apply the Lessons from the TWiTCH Study?

Moderators
avatar for Steven Reader, PhD

Steven Reader, PhD

Pediatric Psychologist, Center for Healthcare Delivery Science
Dr. Reader is a pediatric psychologist in the Center for Healthcare Delivery Science as well as the Division of Behavioral Health at Nemours/A.I. duPont Hospital for Children (N/AIDHC). He is also an Assistant Professor of Pediatrics at the Sidney Kimmel Medical College at Thomas Jefferson University. He completed his doctoral training in pediatric clinical health psychology at the University of Florida. Dr. Reader completed his pre-doctoral internship at N/AIDHC and returned for his fellowship to the University of Florida. He works clinically with children and families coping with a range of pediatric medical conditions, and is the psychologist with the multidisciplinary Sickle Cell Clinic at N/AIDHC. His current research is funded by the NIH Centers for Biomedical Research Excellence (COBRE - P20-GM109021 Stuart (PI)) and focuses on family psychosocial risk screening in pediatric Sickle Cell Disease, and adapting the Psychosocial Assessment Tool as a screener for psychosocial risk in SCD. In addition, Dr. Reader is involved in diversity issues through his association with the American Psychological Association Division 54 Society of Pediatric... Read More →

Speakers
avatar for Valentine Brousse, M.D.

Valentine Brousse, M.D.

Pediatrician, Senior Consultant, Reference Center for Sickle Cell Disease, Necker Hospital in Paris
Dr. Valentine Brousse is a pediatrician specializing in haemoglobinopathies. She is a senior consultant working for the Reference Centre for Sickle Cell Disease in Necker Hospital in Paris where over 6500 SCD children are followed, from neonatal diagnosis through transition to adulthood. She is specifically responsible for the Day Care Unit. She coordinates a clinical research program on predictive factors of severity in sickle cell disease children. She is also a collaborator in the INSERM team S 1134... Read More →
avatar for Samir K. Ballas, M.D.

Samir K. Ballas, M.D.

Emeritus Professor of Medicine and Pediatrics at Thomas Jefferson University
Samir K. Ballas received his MD with distinction from the American University of Beirut-Lebanon in 1967. He completed his training in Hematology at Thomas Jefferson University in Philadelphia, Pennsylvania. He is board certified in Internal Medicine, Hematology, Blood Banking, Pa... Read More →
avatar for J. Naylor Brownell, M.D.

J. Naylor Brownell, M.D.

Fellow, Clinical Gastroenterology and Nutrition, Children’s Hospital of Philadelphia
Naylor Brownell is a fellow in clinical gastroenterology and nutrition at the Children’s Hospital of Philadelphia. Before moving to Pennsylvania, he undertook medical school, residency, and a chief residency at the Medical University of South Carolina, where he saw a large population of patients with various types of Sickle Cell Disease. While his primary focus is in malabsorption in gastrointestinal diseases, he is also fascinated by the way extraintestinal disease processes can impact nutrient utilization. His current research with Vitamin A and Sickle Cell Disease is supported by a grant from Abbot Nutrition/The NASPGHAN Foundation for advanced training in clinical nutrition, as well as the Sickle Cell Disease Center and the Nutrition Center at the... Read More →
avatar for Deepak Choudhary​, MBBS, M.D., MRCPCH​

Deepak Choudhary​, MBBS, M.D., MRCPCH​

Dr. Deepak Choudhary did his medical school in India and then moved to the United Kingdom to do 8 years of training in Pediatrics rotating through various specialties including, Hematology and Oncology at Birmingham Children's Hospital. His final 3 years were predominantly in Pediatric Endocrinology. Additionally, during this training, he passed the MRCPCH... Read More →
avatar for Angela Rivers, Ph.D.

Angela Rivers, Ph.D.

Director of the Sickle Cell Transition Adolescent-Adult Readiness Clinic (STAR) at the University of Illinois, Chicago
Dr. Angela Rivers is currently the Director of the Sickle Cell Transition Adolescent-Adult Readiness Clinic (STAR) at the University of Illinois, Chicago. Her clinical focus is the development of new models of health care delivery for adolescents and young adult patients with sic... Read More →
avatar for Steven Reader, PhD

Steven Reader, PhD

Pediatric Psychologist, Center for Healthcare Delivery Science
Dr. Reader is a pediatric psychologist in the Center for Healthcare Delivery Science as well as the Division of Behavioral Health at Nemours/A.I. duPont Hospital for Children (N/AIDHC). He is also an Assistant Professor of Pediatrics at the Sidney Kimmel Medical College at Thomas Jefferson University. He completed his doctoral training in pediatric clinical health psychology at the University of Florida. Dr. Reader completed his pre-doctoral internship at N/AIDHC and returned for his fellowship to the University of Florida. He works clinically with children and families coping with a range of pediatric medical conditions, and is the psychologist with the multidisciplinary Sickle Cell Clinic at N/AIDHC. His current research is funded by the NIH Centers for Biomedical Research Excellence (COBRE - P20-GM109021 Stuart (PI)) and focuses on family psychosocial risk screening in pediatric Sickle Cell Disease, and adapting the Psychosocial Assessment Tool as a screener for psychosocial risk in SCD. In addition, Dr. Reader is involved in diversity issues through his association with the American Psychological Association Division 54 Society of Pediatric... Read More →



Sunday April 30, 2017 11:00am - 12:30pm
305 North Lobby 3rd Floor

11:00am

Abstract Breakout Sessions I Psychosocial
JSCDH-D-17-00021, Arielle Langer, M.D.
Hospital admissions, mortality and comorbidities among New York State sickle cell patients, 2005-2013

JSCDH-D-17-00044, Caroline Wilder, B.S.
Sickle Cell Disease Transition Assessment and Readiness: Baseline vs. Post-Intervention Analysis  

JSCDH-D-17-00027, Sophie Lanzkron, M.D.
Acute Care Utilization is more common in patients with sickle cell disease who have chronic complications and chronic pain: A Preliminary Report from The ESCAPED Trial

JSCDH-D-17-00030, Ismahan Adan, BA
Sickle Cell Trait Knowledge and Health Literacy in Caregivers Who Receive in-Person Sickle Cell Trait Education

JSCDH-D-17-00029, Lyn Balsamo, Ph.D.
Longitudinal Analysis of the Effectiveness of a Multi-Disciplinary Inpatient Program for the Management of Pediatric Sickle Cell Pain Crises

Speakers
IA

Ismahan Adan

Newborn Screening Coordinator, Comprehensive Sickle Cell and Thalassemia Program, Nationwide Children's Hospital
Ismahan is the Newborn Screening Coordinator for the Comprehensive Sickle Cell and Thalassemia Program in the HEM/ONC/BMT division at Nationwide Children's hospital in Columbus, Ohio. Ismahan is also the Hemoglobinapathy educator for caregivers of children with trait. She receive... Read More →
avatar for Caroline Wilder, B.S.

Caroline Wilder, B.S.

Clinical Research Coordinator / Data Manager, Augusta University Pediatric Sickle Cell and Hemophilia Treatment Program
Caroline is a Research Assistant in the section of Pediatric Hematology/Oncology at Augusta University in Augusta , GA, where she works in both the Comprehensive Sickle Cell Program and the Pediatric Hemophilia Treatment Center. Caroline received her Batchelor’s degree in Biology... Read More →
avatar for Arielle Langer, MPH, M.D.

Arielle Langer, MPH, M.D.

Fellow, Hematology Oncology, Mount Sinai Hospital
Arielle Langer graduated Phi Beta Kappa and magna cum laude with a BA in Economics from Dartmouth College. She attended medical school at Columbia University College of Physicians and Surgeons where she graduated Alpha Omega Alpha and concurrently completed a Masters in Public He... Read More →
SL

Sophie Lanzkron, M.D.

Director, Assistant Professor of Medicine and Oncology, Sickle Cell Center for Adults at Johns Hopkins



Sunday April 30, 2017 11:00am - 12:30pm
209/210 Prefunction 2nd Floor

12:30pm

Grab & Go Lunch
Sunday April 30, 2017 12:30pm - 1:45pm
Fort Lauderdale Convention Center 1950 Eisenhower Blvd, Fort Lauderdale, FL 33316

2:00pm

Abstract Breakout Sessions II Clinical Epidemiology
JSCDH-D-17-00048, Anne Marie Trolard & Benjamin Perry Cooper, MPH
Geographic Disparities among Hydroxyurea Medicaid Claims in Missouri

JSCDH-D-17-00029, Lyn Balsamo, Ph.D.
Longitudinal Analysis of the Effectiveness of a Multi-Disciplinary Inpatient Program for the Management of Pediatric Sickle Cell Pain Crises

JSCDH-D-17-00038, Lori E. Crosby, PsyD
The Relationship between Self-Efficacy, Self-Management and Quality of Life in Adolescents and Young Adults with Sickle Cell Disease

JSCDH-D-17-00017, Lori E. Crosby, PsyD
Barriers to Care and Hydroxyurea Adherence in Children with Sickle Cell Disease 

JSCDH-D-17-00023, Kirshma Khemani, M.D.
Discovering Normal: Life after Hematopoietic Stem Cell Transplant for patients with Sickle Cell Disease

Moderators
avatar for Lori E. Crosby, PsyD

Lori E. Crosby, PsyD

Professor in the Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center
Lori E. Crosby, PsyD, is a Professor in the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children’s Hospital Medical Center (CCHMC) and Department of Pediatrics at the University of Cincinnati College of Medicine. Dr.Crosby is also Co-Director of the Cinc... Read More →

Speakers
KK

Kirshma Khemani, M.D.

Kirshma Khemani completed her Medical Degree at Saba University School of Medicine in 2008. Dr. Khemani completed her residency in Pediatrics at William Beaumont Hospital in 2012 and a fellowship in Pediatric Hematology/Oncology at Arkansas Children’s Hospital/University of Arkan... Read More →
avatar for Benjamin Perry Cooper, MPH

Benjamin Perry Cooper, MPH

Center Manager for the Public Health Data & Training Center, Institute for Public Health at Washington University
Ben Cooper is Center Manager for the Public Health Data & Training Center within the Institute for Public Health at Washington University in St. Louis, Missouri. His center focuses on data management, consultation, and education. He has an extensive background working with data... Read More →
avatar for Lori E. Crosby, PsyD

Lori E. Crosby, PsyD

Professor in the Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center
Lori E. Crosby, PsyD, is a Professor in the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children’s Hospital Medical Center (CCHMC) and Department of Pediatrics at the University of Cincinnati College of Medicine. Dr.Crosby is also Co-Director of the Cinc... Read More →
AM

Anne Marie Trolard

Data Analyst, Washington University in St. Louis



Sunday April 30, 2017 2:00pm - 3:30pm
209/210 Prefunction 2nd Floor

2:00pm

Abstract Breakout Sessions II Health Services Research
JSCDH-D-17-00002, Samia Jaffar & Ellsworth Grant, M.D.
A Pilot Study of Sickle Cell Anemia in Belize

JSCDH-D-17-00024, Sophie Lanzkron, M.D.
Applying Sickle Cell Disease Quality Metrics to an Integrated Care System

JSCDH-D-17-00034, Morgan McGhee, M.S.
Case study of impact of sickle cell day unit on adult patient outcomes post pediatric transition

JSCDH-D-17-00013, Diana Ross, MSN, RN 
Patient and caregiver understanding of shared decision making for sickle cell disease: A qualitative study

JSCDH-D-17-00040, Connie Piccone, M.D.
Type 1 Diabetes Mellitus and Sickle Cell Disease: A case series of Pediatric patients at Rainbow Babies & Children’s Hospital 

Moderators
DR

Diana Ross, MSN, RN

Research Coordinator at Emory University
Diana Ross is an MSN, RN and is pursuing her PhD in nursing research. She is currently employed as a research coordinator at Emory University in the Bone Marrow Transplant department. Her primary interest is decision-making in the sickle cell population and mixed methods research... Read More →

Speakers
avatar for Samia Jaffar

Samia Jaffar

Data Assistant, Tufts University School of Medicine
Samia Jaffar is currently completing her Master of Public Health degree at Tufts University School of Medicine in Boston, MA. Her area of academic concentration is in Epidemiology and Biostatistics. Additionally, she holds a Bachelor of Science degree in Cellular and Molecular Biology from California State University Northridge. Samia currently works as an data assistant for a research unit that studies the relationship between infectious diseases and nutrition. After completing her... Read More →
avatar for Connie Piccone, M.D.

Connie Piccone, M.D.

Specialist, Pediatric Hematology/Oncology, Case Western Reserve University School of Medicine
Dr. Connie Piccone is a specialist in pediatric hematology/oncology and Assistant Professor in the Department of Pediatrics at Case Western Reserve University School of Medicine. She is the Clinical Director of the Sickle Cell Anemia Center at University Hospitals (UH) Rainbow Babies and... Read More →
SL

Sophie Lanzkron, M.D.

Director, Assistant Professor of Medicine and Oncology, Sickle Cell Center for Adults at Johns Hopkins
MG

Morgan G. McGhee, M.S.

Morgan is a fourth year PsyD student. She graduated from Duke University with a B.A. in Psychology and Public Policy. Before Morgan began graduate school, she was a research associate for autism at the Hussman Institute for Human Genomics at the University of Miami.Morgan has completed externships working at an outpatient adult clinic focusing on depression, anxiety and trauma, and as part of an interdisciplinary team providing consultation and liaison services for a large public hospital. There she developed a sickle cell support group and began a service providing complimentary individual psychotherapy for patients with sickle cell disease. Currently, Morgan is completing an externship in the spinal cord injury unit of a local government hospital providing consultations, inpatient and outpatient psychological services, and group therapy... Read More →
DR

Diana Ross, MSN, RN

Research Coordinator at Emory University
Diana Ross is an MSN, RN and is pursuing her PhD in nursing research. She is currently employed as a research coordinator at Emory University in the Bone Marrow Transplant department. Her primary interest is decision-making in the sickle cell population and mixed methods research... Read More →



Sunday April 30, 2017 2:00pm - 3:30pm
305 Prefunction 2nd Floor

2:00pm

Abstract Breakout Sessions II Clinical Research
JSCDH-D-17-00006, Hemant Misra, Ph.D.
A Phase 2 Safety Study of SANGUINATE in Patients with Leg Ulcers

JSCDH-D-17-00039, Jennifer Keates-Baleeiro, M.D.
Comparison of Two Methods of Transfusion for Stroke Prevention in Sickle Cell

JSCDH-D-17-00049, Ju Ae Park 
Successful Implementation of Hydroxyurea in a Single Pediatric Sickle Cell Center 

JSCDH-D-17-00046, Samuel Rodgers-Melnick, MT-BC
The Effects of a Single Music Therapy Session on The Pain OF Adult Patients with sickle cell disease: Results of a mixed methods study  

JSCDH-D-17-00025, Cynthia B. Sinha, PhD, Diana Ross, MSN, RN, Nitya Bakshi, M.D., Lakshmanan Krishnamurti, M.D.
Older Adults with Sickle Cell Disease are Skeptical About Hydroxyurea: Results of a Qualitative Study

JSCDH-D-17-00041, Justin Williams, Ph.D.
Creation and Maintenance of a Hematology Support Group for Adolescents and their Parents: Successes, Challenges, and Lessons Learned

Moderators
avatar for Hemant Misra, PhD

Hemant Misra, PhD

Vice President of Clinical Development, Prolong Pharmaceuticals
Dr. Hemant K. Misra is Vice President of Clinical Development for Prolong Pharmaceuticals and is responsible for international clinical studies. He has over 30 years of experience in pharmaceutical and biopharmaceutical development, global clinical study management, and corporate development. Prior to joining Prolong, Dr. Misra managed the drug development, cGMP- manufacturing operations in US and abroad, CTM, quality systems, and multiple global clinical studies at XTL Biopharmaceuticals, Inc. (a public biopharmaceutical firm). | Dr. Misra has developed multiple antibodies and small molecules from Research and Development to various stages of clinical development, and some of them... Read More →

Speakers
avatar for Jennifer Keates-Baleeiro

Jennifer Keates-Baleeiro

Associate Professor of Pediatrics, Center for Childhood Cancer and Blood Disorders at the Children’s Hospital at Erlanger in Chattanooga, TN.
Dr. Jennifer Keates-Baleeiro is an Associate Professor of Pediatrics at the Center for Childhood Cancer and Blood Disorders at the Children’s Hospital at Erlanger in Chattanooga, TN. She currently leads the Comprehensive Sickle Cell Clinics for babies to young adults, who were identified through the State of Tennessee Department of Health Newborn Screening Program. She additionally is the Educational Director for the division of Pediatric Hematology-Oncology. | | Dr. Keates-Baleeiro received her Bachelor of Science from Tufts University and her Masters in Psychology from New York University before receiving her medical degree from MCP-Hahnemann University (Drexel). She completed her residency at... Read More →
NB

Nitya Bakshi, M.D.

Pediatric Hematologist/Oncologist Children Hospital Healthcare of Atlanta
avatar for Lakshmanan Krishnamurti, M.D.

Lakshmanan Krishnamurti, M.D.

Professor, Director of BMTChair of Blood and Marrow Transplant Aflac Cancer and Blood Disorders CenterChildren’s Healthcare of Atlanta, Emory University
Professor, Director of BMTChair of Blood and Marrow TransplantAflac Cancer and Blood Disorders CenterChildren’s Healthcare of Atlanta/Emory University
avatar for Samuel Rodgers-Melnick, MT-BC

Samuel Rodgers-Melnick, MT-BC

Music Therapist, Seidman Cancer Center, University Hospitals of Cleveland
Samuel Rodgers-Melnick, MT-BC is a music therapist specializing in the care of adults with sickle cell disease (SCD). As a clinician at University Hospitals Seidman Cancer Center, Sam developed several interventions directed at improving pain management outcomes in adults with SC... Read More →
avatar for Ju Ae Park

Ju Ae Park

Virginia Commonwealth University
Ju Ae Park is a rising 3rd year medical student at Virginia Commonwealth University.  She obtained her undergraduate degree from George Mason University, after which she continued her work at a transplant community before deciding to enter medical school.  She aspires to become a committed and competent physician who will make an impact on society through involvement in healthcare reform and... Read More →
avatar for Justin Williams, Ph.D.

Justin Williams, Ph.D.

Postdoctoral Fellow in the Department of Psychology, St. Jude Children’s Research Hospital
Justin L. Williams, PhD, is a Postdoctoral Fellow in the Department of Psychology at St. Jude Children’s Research Hospital in Memphis, TN. Justin obtained a master’s degree in clinical and community psychology from the University of North Carolina at Charlotte. After completing her... Read More →
CB

Cynthia B. Sinha, Ph.D.

Cynthia B. Sinha, PhD. I am sociologist with a focus on families, culture, race-ethnicity, and more recently, medical sociology. I have over 10 years of experience in qualitative research methodology. Areas of research interest for Sickle Cell Disease include the experiences of o... Read More →
avatar for Hemant Misra, PhD

Hemant Misra, PhD

Vice President of Clinical Development, Prolong Pharmaceuticals
Dr. Hemant K. Misra is Vice President of Clinical Development for Prolong Pharmaceuticals and is responsible for international clinical studies. He has over 30 years of experience in pharmaceutical and biopharmaceutical development, global clinical study management, and corporate development. Prior to joining Prolong, Dr. Misra managed the drug development, cGMP- manufacturing operations in US and abroad, CTM, quality systems, and multiple global clinical studies at XTL Biopharmaceuticals, Inc. (a public biopharmaceutical firm). | Dr. Misra has developed multiple antibodies and small molecules from Research and Development to various stages of clinical development, and some of them... Read More →
DR

Diana Ross, MSN, RN

Research Coordinator at Emory University
Diana Ross is an MSN, RN and is pursuing her PhD in nursing research. She is currently employed as a research coordinator at Emory University in the Bone Marrow Transplant department. Her primary interest is decision-making in the sickle cell population and mixed methods research... Read More →



Sunday April 30, 2017 2:00pm - 3:30pm
304 North Lobby 3rd Floor Fort Lauderdale Convention Center

3:30pm

Poster Session
JSCDH-D-17-00012, Jennell White, Ph.D.
Establishment of Steady State Adhesion Indices in Sickle Cell disease: Clinical Application of a Standardized Adhesion Bioassay 

JSCDH-D-17-00020

Development of a Hydroxyurea Clinical Decision Support Toolkit for Healthcare Providers 
JSCDH-D-17-00014, 

Frédéric Galacteros

, M.D.


Changes In HU Prescription Level in SCD Severe Patients Lead To Savings In Hospitalization Rate: Results Of A French Pharmacoeconomic Study

JSCDH-D-17-00028, Lewis Hsu. M.D. Ph.D.

Personal Life Goals and Health-Related Quality of Life of Adults after an Allogeneic Hematopoietic Stem Cell Transplantation for Sickle Cell Disease
JSCDH-D-17-00032 , Grace Onimoe M.D.
Impacting Sickle Cell readmission in a Pediatric Setting 
JSCDH-D-17-00010, Diana Rash-Ellis, LSW
Navigating the Health Care System: Challenges and Successes of Sickle Cell Transition Workshop 
JSCDH-D-17-00009
The Management of Sickle Cell Disease (SCD) in a Community Care Setting: An Educational Program of the National Medical Association (NMA)
 
JSCDH-D-17-00022, Dr. Monica Khurana
The Impact of Sickle Cell Disease in Children on Health Care Costs in Indiana 
JSCDH-D-17-00035, Andrew Campbell, M.D.
The Use and Effectiveness of Traditional Medicine for pain management among sickle cell patients in Ghana 

JSCDH-D-17-00015, Kathleen Elizabeth Walsh, M.D., MSc

Interventions proposed bt parents to prevent error in pediatric hydroxyurea use

Speakers
avatar for Diana Rash-Ellis, LSW

Diana Rash-Ellis, LSW

Licensed Social Worker, Pediatric Hematology/Oncology Department Center for Cancer and Blood Disorders, Nemours/AI duPont Hospital for Children
I attended Temple University in Philadelphia, PA and graduated with a Master’s degree in Social Work.  I became a Licensed Social Worker shortly after graduation.  I worked for a home-bound Early Intervention birth-three program in Philadelphia, PA for 10 years.   I moved to Delaware in 2003 to work at the... Read More →
avatar for Frédéric Galacteros,  M.D.

Frédéric Galacteros, M.D.

Professor Frédéric GALACTEROS, MD, specialist in Medical Genetics and Internal Medicine is Professor of Creteil Medical University and Hospital practitioner in Assistance Publique – Hôpitaux de Paris (AP-HP) He is currently Head of the Red Blood Cell Genetic Disease Department in... Read More →
avatar for Grace Onimoe, M.D.

Grace Onimoe, M.D.

Physician, Pediatric Hematology-Oncology, Cleveland Clinic Children’s
Currently an attending physician at the Pediatric Hematology-Oncology department of Cleveland Clinic Children’s. Also a clinical assistant professor of medicine at Case Western University. | Trained in Pediatrics at the Children’s Hospital of Michigan/Wayne State University and Pediatric Hematology/Oncology at Nationwide... Read More →
avatar for Andrew Campbell, M.D.

Andrew Campbell, M.D.

Director, Pediatric Comprehensive Hemoglobinopathies Program Assistant Professor Department of Pediatrics Division of Pediatric Hematology/Oncology Co-Director, Minority International Research Training Program Center for Human Growth and Development, University of Michigan
Dr. Campbell is a graduate of Case Western Reserve School of Medicine completed his residency training @ Harvard Affiliated Massachusetts General Hospital in Boston followed by Pediatric Hematology/Oncology Fellowship @ Northwestern University. Currently he directs the Comprehensive Pediatric Hemoglobinopathies Program which includes the Pediatric Sickle Cell and Thalassemia clinic @ the University of... Read More →
avatar for Kathleen Elizabeth Walsh, M.D. MSc

Kathleen Elizabeth Walsh, M.D. MSc

Director of Patient Safety Research, James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center
Dr. Walsh is director of patient safety research and associate professor of pediatrics at Cincinnati Children’s within the UC College of Medicine. She has extensive experience in the qualitative and quantitative measurement of medication errors and adverse drug events among children in the hospital, clinic, and... Read More →
avatar for Jennell White, Ph.D.

Jennell White, Ph.D.

Post-Doctoral Research Fellow, Wayne State University’s School of Medicine
Dr. Jennell White is a post-doctoral research fellow in the lab of Dr. Patrick Hines at Wayne State University’s School of Medicine (WSU-SOM) in the Department of Pediatrics. Dr. White’s research focuses on mechanisms regulating sickle erythrocyte adhesive interactions during physiologic flow conditions... Read More →
avatar for Lewis L. Hsu, M.D. PhD

Lewis L. Hsu, M.D. PhD

Professor, University of Illinois at Chicago
Lewis Hsu, Professor at University of Illinois at Chicago, is a pediatric hematologist dedicated to finding more cures for sickle cell disease, and improving treatment and education until cures can be found. He earned his MD and PhD (Biophysics) at University of Rochester, pediatric residency at Yale-New Haven, and pediatric hematology-oncology fellowship at... Read More →


Sunday April 30, 2017 3:30pm - 5:00pm
301/302 North Lobby 3rd Floor Fort Lauderdale Convention Center