CASK Registries
Counting CASK — the global census
A global registry initiative to enumerate every individual diagnosed with CASK-related disorders.
Purpose
"In order to start clinical trials, pharmaceutical companies need to know how large the patient base is in each country." The census addresses a critical gap in understanding the prevalence of CASK disorders. Without accurate population estimates, advancing therapeutic interventions becomes significantly more challenging.
How to participate
Registration forms are available in multiple languages — choose yours:
Data protection
Participant information is held on a secure platform compliant with GDPR. Contact is infrequent. You may ask to remove your data at any time — email info@caskresearch.org.