11:15 a.m. Panel Discussion
  • Session Objectives: Discuss the patient, consumer, and public perspective on oversight of clinical gene transfer protocols and how patients who may benefit from future gene therapies view the relevant regulatory landscape.
Moderator: Sharon Terry
  • Committee Member
Panelists: Nicholas Dainiak, M.D., FACP
  • Clinical Professor of Medicine
  • Chairman of Medicine
  • Yale University School of Medicine
Jennifer Farmer, M.S., CGC
  • Executive Director
  • Friedreich's Ataxia Research Alliance
Margie Frazier, Ph.D., LISW-S
  • Executive Director
  • Batten Disease Support and Research Association
12:30 p.m. Lunch

From: A, Data Sources and Methods

Cover of Oversight and Review of Clinical Gene Transfer Protocols
Oversight and Review of Clinical Gene Transfer Protocols: Assessing the Role of the Recombinant DNA Advisory Committee.
Committee on the Independent Review and Assessment of the Activities of the NIH Recombinant DNA Advisory Committee; Board on Health Sciences Policy; Institute of Medicine; Lenzi RN, Altevogt BM, Gostin LO, editors.
Washington (DC): National Academies Press (US); 2014 Mar 27.
Copyright 2014 by the National Academy of Sciences. All rights reserved.

NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.