Review & Evolve Your Registry

Reassess User Needs

Along with evaluating and possibly adjusting your goals, you will want to continually reassess external needs to accommodate changing industry and research priorities.

Adapt to Evolving Research Priorities

Continuing to engage with key research stakeholders is critical to the ongoing success of the registry. Stay up to date with current research interests and consider how they have changed since you first set your registry goals. Assessing changing external priorities could reveal important developments, such as:

  • Need for transition to a new technology platform
  • Changes in your funding sources
  • New or shifting stakeholders depending on the status of current research or industry focus
  • Introduction of new regulatory requirements
  • Changes in Common Data Elements (CDEs)

Continue to Engage with Registry Participants

Within an ongoing, voluntary registry, the ability to recruit and retain participants depends on the relevance of the registry. If participants feel that the registry no longer meets their needs, they will likely stop participating and your registry can lose momentum. It is critical to stay connected with participants and understand their expectations of the registry.

Surveys or other methods of collecting feedback from current and potential registry participants can be useful tools. They can expose recruitment or retention barriers and identify potential improvements to maintain your registry’s relevance to their rare disease community.