CRD Patient Registry: How to Join

What is CRD’s Patient Registry?

CRD’s patient registry is a network of rare disease patients and families around the world that helps contribute to the scientific research of rare diseases. By joining the registry, CRD will use your patient data to let you know if there are any research studies or therapeutics in development that may be of interest to you.

Why does CRD have a Registry?

CRD will use the data provided by patients in the registry to identify areas of need for future drug development programs. The registry is an invaluable resource both for CRD and our patients, as it helps us to better target the best ways to serve our patient communities and guides our therapeutic development efforts.

How Will the Registry Benefit Patients Directly?

The Registry will benefit patients by offering them an opportunity to directly participate in the drug development process. You will be notified when CRD identifies new areas of focus and believes that you may be a good candidate for the program.

How Do I Join the Registry?

To join the CRD registry, visit the Get Involved page on our website and scroll down to “Join the Registry.” Click the “register” button and follow the prompts in order to join the registry.