Global Genes will present a two-part webinar series entitled “Understanding Rare Disease Registries,” which will cover the topics that every organization involved in planning a registry should consider.
Part One – Wednesday July 31, 2013, 11:00 am PT
Part One of the series will cover the different types of registries and features of a robust patient registry, as well as options currently available for building a new registry or enhancing an existing one. The expert panelists will discuss resources for questionnaire design, collecting natural history information, considerations for drug development and the FDA, and informed consent and data sharing.
Dr. Stephen Groft, Director, Office of Rare Diseases Research
Dr. Marshall Summar, Chief of the Division of Genetics and Metabolism
Megan O’Boyle, Parent Advocate, Phelan-McDermid Syndrome Foundation