The Cavernous Malformation Registry Can Help Advance Your Research
The Cavernous Malformation Registry aggregates data from patient-reported outcomes, medical records, and biospecimens to form a more complete picture of individuals with cavernous malformations in the brain and spinal cord. We can assist your research efforts in several ways:
- Provide access to previously collected Registry data
- Help collect new data from Registry participants
- Help you find participants for your study
- Release new surveys to help you better understand CCM
We are committed to sharing Registry data to foster engagement with this rare disease. Please email firstname.lastname@example.org to learn more about accessing data from the Cavernous Malformation Registry. We look forward to working with you.