Create Your Registry Plan

Set Goals

Before creating a registry and setting your goals, determine whether a registry has already been created for your rare disease. Partnering with an existing registry allows for you to combine efforts, avoid “reinventing the wheel,” and reduce redundancy. There are many ways to find out whether a registry currently exists for your rare disease.

After confirming that no other registry exists for your disease, you can start creating your registry.

Be specific, detailed, and realistic about the goals for your registry and clear about what you plan to do with the information you collect. Focus on how you can use your registry to organize your patient community and connect patients and researchers. Have a long-term vision for capturing detailed participant medical information to support the development of new treatments. Below are some goals to consider. Use the RaDar Tool: Registry Plan Template for help getting started.

Short-term registry goals:

  • Identify patients who are interested in participating in research studies.
  • Describe the personal characteristics of participants in your registry.
  • Contact participants to inform them about new studies.

Long-term registry goals:

  • Document patient medical history.
  • Discover trends and common needs of participants.
  • Improve scientific understanding of the disease.

Visit the Resources section of this step for resources that provide additional information for setting up your registry.


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