Sickle Cell Disease Workshop: Clinical Priorities and Clinical Trials

Plenary Session:  Clinical Priorities

Welcome and Opening Remarks

Susan B. Shurin, M.D.
Deputy Director, NHBLI, and Acting Division Director
Division of Blood Diseases and Resources

Willarda V. Edwards, M.D., M.B.A.
President and Chief Operating Officer
Sickle Cell Disease Association of America

Kwaku Ohene-Frempong, M.D.
Professor of Pediatrics
University of Pennsylvania School of Medicine

Barbara Alving, M.D.
Director
National Center for Research Resources

New Ways of Looking at Clinical Research
Barbara Alving, M.D.
Director
National Center for Research Resources
 

Reports from Sub-Committees on High-Priority Clinical Research

• Pulmonary/Cardiac Complications
  Co-chairs:
  Johnson Haynes, M.D., University of South Alabama
  Mark T. Gladwin, M.D., University of Pittsburgh
• Renal Complications
  Co-chairs:
  Scott D. Miller, M.D., SUNY Downstate Medical Center
  Jon Scheinmann, M.D., University of Kansas School of Medicine
• Transplantation
  Co-chairs:
  Mark C. Walters, M.D., Children's Hospital Oakland Research Institute
  John E. Levine, M.D., University of Michigan

Break

Continue Reports from Sub-Committees on High-Priority Clinical Research

• Pain
  Co-chairs:
  Wally Smith, M.D., Virginia Commonwealth University
  Sean Mackey, M.D., Ph.D., Stanford School of Medicine
• Epidemiology/Patient Outcomes
  Co-chairs:
  Ellie Schoenbaum, M.D., Albert Einstein College of Medicine
  Kevin Schulman, M.D., Duke University
• Fetal Hemoglobin
  Co-chairs:
  Alan Schechter, M.D., National Institute of Diabetes and Digestive and Kidney Diseases
  George J. Dover, M.D., Johns Hopkins University
• Neurology
  Co-chairs:
  Robert J. Adams, M.D., Medical University of South Carolina
  Russell E. Ware, M.D., Ph.D., St. Jude Children's Research Hospital
• Vascular Biology/Pathophysiology
  Co-chairs:
  Barry Coller, M.D., Rockefeller University
  Roy L. Silverstein, M.D., Cleveland Clinic

Summary

Adjournment

Breakouts

• Pulmonary/Cardiac Complications
• Renal Complications
• Transplantation
• Pain
• Epidemiology/Patient Outcomes
• Fetal Hemoglobin
• Neurology
• Vascular Biology/Pathophysiology

Lunch (on your own)

Reports from Morning Breakouts

Keynote Address: Building Networks: Observations From Oncology and Non-Medical Industries
David Dilts, Ph.D., M.B.A.
Director, Center for Management Research in Healthcare
Professor of Operations Management
Director, Engineering Management Program
School of Engineering
Vanderbilt University

Plenary Session:  Creating the Infrastructure for Clinical Trials: Lessons Learned and Future Plans

Attributes of an Optimal Clinical Trials Framework for Sickle Cell Disease
Kathryn Hassell, M.D.
Colorado Sickle Cell Center and NHLBI Division of Blood Diseases and Resources

Report from Sickle Cell Disease Task Force (ASPHO Summit)
Clinton Joiner, M.D., Ph.D.
Cincinnati Children's Hospital Medical Center

Lessons Learned: Clinical Trials in Oncology
Judith Manola, M.S.
Dana-Farber Cancer Institute

Lessons Learned: Clinical Trials in HIV/AIDS
James Neaton, Ph.D.
University of Minnesota

Lessons Learned: Clinical Trials in Asthma
Gail Weinmann, M.D.
Division of Lung Diseases, National Heart, Lung, and Blood Institute

Comments from the SCD Community

Summary and Next Steps
Susan B. Shurin, M.D.
Deputy Director, National Heart, Lung, and Blood Institute and
Acting Division Director, Division of Blood Diseases and Resources

Adjournment