August 19, 2011, 9:00 a.m. to 4:00 p.m. PDT

UW Medicine, South Lake Union Campus
University of Washington
815 Mercer St.
Seattle, WA 98109-4714

View agenda.

Registry and biobank boot camp is a hands-on workshop, ideal for disease advocacy organizations planning for, or further developing, their registry or biobank. 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 this cohort and developing a robust natural history study takes time, and creating a registry is the first step in the process. Some organizations will also choose to collect biological samples.

This interactive training includes a comprehensive overview of what is needed to establish and maintain a registry or biobank, including best practices for working with advisors, an introduction to questionnaire design, an introduction to sample collection, tools to assess registry and biobank vendors, a review of organizational operations and resources, strategies for good governance, and tips for recruitment and retention. The day will conclude with participants developing an action plan for making their registry or biobank a reality.

Boot Camp trainings are available to leadership of disease advocacy organizations for both common and rare diseases. Attendance is limited to 20-25 participants depending on venue.

These sessions build on other Genetic Alliance Registry and BioBank training initiatives. Past boot camps include the January 10, 2010 Boot Camp, co-sponsored by the Office of Rare Disease Research in Bethesda, MD, the March 7, 2011 Boot Camp in New York, NY, and the June 26, 2011 Boot Camp at the Genetic Alliance 25th Annual Conference in North Bethesda, MD.

For more information, please contact Liz Horn, Director of Genetic Alliance BioBank at lhorn@geneticalliance.org.