Roadmap Rare diagnosis Research & Registries
Back to roadmapEngaging with clinical trials (research studies) associated with a specific condition or following their progress can provide insights into new information and treatments under investigation. Some trials may provide access to treatments/therapies not yet available to the general public.
Through collection of health information, patient registries can build further knowledge and understanding about the impact of rare diseases including natural history (how a disease may progress over time) as well as target areas for management improvement and research.
Resources
Government sites with information about research participation and directories of current trials.
- Clinical Research Trials and You | National Institutes of Health
- Clinical Trials Directory | NIH
- Australian Clinical Trials |Australian Government
- Orphanet | Research and trials Europe
The Rare Diseases Clinical Research Network (RDCRN) registry collects and stores contact information of people who want to participate in RDCRN-sponsored research or initiate their own research projects.
List of diseases currently being studied by the RDCRN and list of publications.
If there are no currently available clinical studies for a specific condition, ResearchMatch is a US government program that helps connect people interested in research studies with researchers from top medical centers across the United States.
Search for registries by specific disease or see examples of lists below.
Suggest a resource: send email to gcwg@udninternational.org