CRB1 Patient Registry

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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.


Button to click to enroll in the registry

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.

For questions specific to the CoRDS CRB1 registry please visit here for contact information.

For questions regarding the CRBF please contact Kristin Smedley, CEO, CRBF at

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