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The CURE4/6 Registry

Be counted. Be connected.

For rare diseases, numbers matter. Choose the path that fits you.

Choose your path

  • Patients & families

    Have you been diagnosed with RNU4-2 or RNU6 retinal disease — or been told you carry a variant of uncertain significance (VUS) in one of these genes? Join the U4/U6 Registry. It takes about 5 minutes.

    Start the survey

  • Clinicians

    Have a patient with RNU4-2 or RNU6 retinal disease? Send them a secure link to join the U4/U6 Registry. They complete the registry themselves.

    Invite a patient

  • Researchers & geneticists

    Contribute variant or clinical data, or discuss collaboration with our scientific team.

    Get in touch

What to expect when you join

Joining the U4/U6 Registry is simple, private, and in your control. Only you and the Registry Administrator have access to your information. It is not available to the public.

  • Joining takes about 5 minutes
  • Your information is kept private and secure, HIPAA and GDPR compliant.
  • Register anonymously if you prefer.
  • Start now and finish later — your progress is saved.
  • Participation is voluntary and overseen by an ethics board (IRB).
  • You choose how you’re contacted, and you can update or withdraw at any time.

The CURE4/6 registry is powered by our research partner Aretetic and their secure DigitalCabinet platform.