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:

  1. Complete the CoRDS Registry Screening Form
  2. Follow the links in subsequent email to begin the Enrollment Process

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