Genetic Alliance Registry and Biobank Boot Camp
Sunday, June 26, 2011
9:00 a.m. – 3:00 p.m.

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 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. This training is available to leadership of disease advocacy organizations for both common and rare diseases.
Attendance is limited to 25 participants.

Presenters:
Liz Horn – Director, Genetic Alliance BioBank