Recommendations for Research and Public Health Infrastructure Development
Breakout Session 1: Priorities for Needed Research: Development of Therapies and Screening/Diagnostic Technologies
Louis Kunkel, Ph.D. (lead)
Robert F. Vogt, Jr., Ph.D. (rapporteur)
Breakout Session 2: Priorities for Needed Epidemiological and Clinical Studies: Natural History, Incidence, Surveillance, etc.
Paul Romitti, Ph.D. (lead)
Stuart Shapira, M.D., Ph.D. (rapporteur)
Breakout Session 3: Priorities for Needed Health Services and Health Service Outcome and Utilization Research
Gurvaneet Randhawa, M.D., M.P.H. (lead)
W. Gregory Feero, M.D., Ph.D. (rapporteur)
Breakout Session 4: Priorities for Developing Provider, Patient, and Public Education and Addressing Ethical, Legal, and Social Issues (ELSI) Topics
Sharon Terry, M.A. (lead)
Terry Davis, Ph.D.
Melissa Parisi, M.D. Ph.D. (rapporteur)
Breakout Session 5: Priorities for Creating Systems of Care from Infancy to Adulthood
Bonnie Strickland, Ph.D. (lead)
Tracey Trotter, M.D.
Valerie Cwik, M.D.
Scott Grosse, Ph.D. (rapporteur)