International Registry of Individuals with Kabuki
We invite you to participate in this important initiative! KSN has partnered with Sanford Research to establish a registry of individuals with Kabuki. The Coordination of Rare Diseases at Sanford (CoRDS) is a centralized international registry for individuals with rare syndromes for the purpose of connecting families with researchers. Your information is stored in a secure database and is kept confidential. Researchers with appropriate approval can view the de-identified database and request CoRDS personnel to contact participants on their behalf.
Enrollment in the CoRDS registry is designed to be a simple process:
- Complete the CoRDS Registry Screening Form
- Follow the links in subsequent email to begin the Enrollment Process