Create Your Registry Plan

Plan for Roadblocks

Any project is bound to face some roadblocks along the way. Create a list of things that might slow down your progress and include some ideas to move past the obstacles.

Potential Roadblocks:

  • Lack of time
  • Lack of interest within the patient community
  • Competing ideas over the direction of the registry
  • Difficulty making decisions
  • Existence of other registries for the disease
  • Difficulties of working alongside a research group versus doing it by yourself
  • Too many “cooks in the kitchen”

Possible Solutions:

  • Find others in your patient advocacy group to help share the workload.
  • Use social media to create buzz by sharing stories, videos, infographics, and articles. Focus on the needs of the community and how your registry can address them.
  • Work to stay unified by compromising and focusing on shared goals.
  • Get the advice of other patient advocacy groups that have established similar registries.
  • Define roles and responsibilities of registry staff.


Consider Constraints
Video: Institutional Review Boards (IRBs) U.S. Department of Health and Human Services (HHS) (link)