What is the International Registry for Individuals with WSS?

WSS Foundation has partnered with the Coordination of Rare Diseases (CoRDS) Program of Sanford Research, a not-for-profit research institution, to establish and maintain a registry of individuals with WSS. The CoRDS Program is a centralized international registry for individuals diagnosed with rare diseases and syndromes. Its purpose is to connect patients and researchers to advance knowledge, treatments, and cures for rare diseases.

Who should register?

All individuals (or their legal guardians) with WSS are encouraged to enroll in the CoRDS registry toward the goal of better understanding and managing WSS. Enrollment is free and participants’ information is stored a confidential, secure database.

Who Can Access Registry Data?

Researchers with appropriate approval can view de-identified registry data and request that CoRDS staff contact participants on their behalf for additional research opportunities.

How to Enroll?

  1. Complete the CoRDS registry Screening Form below.
  2. Follow links in subsequent email to begin enrollment.