Roadmap Rare diagnosis Research & Registries
Back to roadmapSome patients and families may be interested in whether there are clinical research opportunities available to them.
They may also be interested in participating in a patient registry that collects information about patients who have a specific rare condition to better understand the signs and symptoms and help with the development of new treatments.
Resources
- https://www.australianclinicaltrials.gov.au/
- https://rarediseases.org/iamrare-registry-program/
- https://mygene2.org/MyGene2/families/UDN
Suggest a resource: send email to gcwg@udninternational.org