Co-sponsored by the Office of Rare Disease Research
January 10, 2010, 3:00 p.m. to 9:00 p.m.
Doubletree Hotel, Bethesda, MD

View Boot Camp agenda and materials here.

Genetic Alliance hosted the Registry and Repository Boot Camp on January 10, 2010. The hands-on workshop was ideal for those planning for, or further developing, their registry and biorepository.

We believe that a well-characterized cohort, with clearly established clinical endpoints, is essential for clinical trials. When a potential treatment is discovered, the cohort must be ready for rapid enrollment in clinical trials. Establishing the cohort can take awhile, and having a robust natural history study takes time. Establishing the right clinical biomarkers and endpoints for trials is difficult and should be a major focus as the cohort is developed.

Disease-specific organizations (for common and rare diseases) participated in, and even led, these activities. Topics were determined by the needs of the attendees. Both beginner and experienced tracks were offered.

This Boot Camp was co-sponsored by the Office of Rare Disease Research, and preceded the Office of Rare Disease Research Conference on January 11^th and 12^th: Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical Data.