Create Your Registry Plan
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.
- Search ClinicalTrials.gov using the term “registry” and the name of your rare disease
- Conduct a general internet search
- Contact patient advocacy groups for the disease
- Contact the Rare Disease Patient Registry Coordinators
- Search the RD-Connect Registry & Biobank Finder
- Reach out to the Genetic and Rare Diseases Information Center (GARD)
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.