Goal:
Speakers and Affiliations
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
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
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
Session Objective
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
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.
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: 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
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
Frédéric Galacteros
, M.D.