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HNRNP-RNDD Family Registry

Patient-focused and family-led research is critical to understanding rare genetic disorders. Sign up for our registry to be counted in the number of HNRNP-RNDD families we know of and to be contacted for future research projects.

Join RegistryGet Your CRID
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Step 1

First, Get Your CRID

Before registering, you'll need to create a CRID (Clinical Research ID). This is a patient-generated identifier that protects your privacy while enabling you to participate in research studies.

Benefits for Patients

  • You control who sees your information
  • No need to share sensitive personal data with researchers
  • Reduces "survey fatigue" by linking your data across studies
  • Easy to share with multiple research projects

Benefits for Research

  • Enables de-identified data sharing between studies
  • Helps researchers merge and compare clinical data
  • Reduces data silos and inefficiencies
  • Supports patient-centered research collaboration
Register for Your CRID

You'll receive an email with a link to set up your account. Once complete, return here with your CRID to join our registry.

Step 2

Join the Registry

Once you have your CRID, complete the form to join our family registry.

What we collect

  • Your CRID for secure identification
  • Email for future communications
  • Which disorder affects your family
  • Location for our global community map

Don't have a CRID yet? Register here

Your location helps us map our global community and connect nearby families.

The information provided is kept confidential and used only for registry purposes and, if opted in, to contact you about research opportunities. We will never share your personal information without your consent.

Why Join the Registry?

Be Counted

Help us understand the true prevalence of HNRNP-related disorders. Every registration helps build a clearer picture of our community.

Advance Research

Be among the first to learn about new research studies, clinical trials, and opportunities to contribute to scientific understanding.

Connect with Others

Join a global network of families affected by HNRNP disorders. Share experiences and find support from those who understand.