Promote Your Registry
Promote Your Registry
Find researchers who are studying your registry’s rare disease and reach out to them to discuss ways that your registry can support their research projects.
Consider these suggestions for promoting your registry from FasterCures, “Expanding the Science of Patient Input: Building Smarter Patient Registries .”
- Publish periodic data summaries.
- Promote and advertise the ability for end users to direct queries or surveys.
- Exhibit at professional society/trade conferences and demonstrate the availability of registry data.
- Contract with external researchers to conduct studies that you and your participants consider important.
- Issue funding opportunities (if financially feasible) for projects that use registry data.
- Post data sets on open research platforms.
- Issue data challenges or prizes to stimulate data analysis.
Refer to the Resources section of this step to learn about other resources that discuss methods for promoting your registry.