In rare disease research, every piece of information matters.
The most meaningful advances happen when researchers can connect data from different studies. That’s where a Clinical Research ID (CRID) comes in.
Because our community is rare and spread across the globe, every single child matters. Many of you have already shared your genetic information with our foundation, and as the demand from researchers steadily grows, it is essential that no family is left behind and that every child has the chance to be represented in future studies.
To do this in a secure and organized way—and to remain compliant with HIPAA and GDPR—we are asking all families to obtain a de-identified Community Research Identifier (CRID).
This CRID will link your child’s genetic variant with their CHAMP record and any studies they have participated in. It is a vital step to ensure your child’s information is protected while also making it easier for researchers to connect with the right patients.