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

View Boot Camp agenda and materials here.

Genetic Alliance hosted the Registry and Repository Boot Camp on January 10, 2010 from 3:00-9:00 p.m. The hands-on workshop was ideal for those planning for, or further developing, their registry and biorepository.

We believe 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 over time 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 a beginner and an experienced track 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.