WHAT IS REQUIRED TO START A REGISTRY AND/OR BIOBANK?
Starting a Registry and/or Biobank takes a lot of planning, organization and implementation. It requires making resolutions, setting goals, employing a staff, creating staff designs, detailing an operations scheme, and creating contingency plans.
More details on how to start a registry/biobank can be found on WikiAdvocacy.
Additionally, check out the GARB Interactive Toolbox to understand the detailed steps involved.
WHAT CONSTITUTES AN EFFECTIVE REGISTRY AND/OR BIOBANK?
Early in its history, members of Genetic Alliance found a need to start a robust clinical registry on a central server, with extensive reporting capability and a web interface, and an integrated biorepository. Through extensive discussions with registry and biorepository experts across the world, major requirements were identified.
These requirements are necessary to ensure that biobank and registries serve their purposes.