Clinical Research ID

To ready the Koolen-de Vries Syndrome community for clinical research, we encourage patients to generate a unique universal ID. The unique ID is 8 characters long. Patients can then decide which researchers they wish to share their unique identifier with. Researchers can then reuse, merge and share your research data without using your PII (Personally Identifiable Information) or PHI (Protected Health Information). Obtaining a CRID is free and confidential.

Visit The CRID website to read more about:

  • Benefits for Patients
  • Benefits for Researchers
  • Benefits for the Research Community

Best of all – this will only take moments to complete! Log in, create your identifier and done!

CRID Example from