The Curing Retinal Blindness Foundation is proud to partner with Sanford Research, a nonprofit research institution, to create a CRB1 LCA/RP patient registry.
It’s here! The CRBF and Coordination of Rare Disease at Sanford (CoRDS) Patient Registry for CRB1 LCA/RP.
For Families
What is the purpose of the Registry?
While there are many benefits to a patient regisry, the following are a few highlights:
- Enable the Curing Retinal Blindness Foundation to provide you with information about research for people with your inherited retinal disease, including clinical trials
- Enable the collection and sharing of information about CRB1 LCA/RP from a large number of patients with the research and medical community, so that scientists and doctors can better understand this disease and how to treat it.
- Connect scientists studying CRB1 LCA/RP diseases with patients in the registry who may qualify for their research studies or clinical trials.
Click here to enroll in the CRB1 Disease Registry.
For questions specific to the CoRDS CRB1 registry please click here for contact information.
For questions regarding the CRBF please contact Kristin Smedley, CEO, CRBF at curingretinalblindness@gmail.com
For Researchers
The patient de-identifiable data in the CoRDS rare disease registry is accessible to our researchers and free to obtain. To begin the approval process, please download the CoRDS Researcher Access Request Form, fill it out and email to CoRDS.
You can also contact us (utilizing the link below) and we can work with you and CoRDS to make sure you can get the data you need for your specific research and study needs.
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