This questionnaire has been created to gather information from those families and individuals who are willing to participate in the first European Registry for Tay-Sachs and Sandhoff Disease.

By answering the questions in the following pages you agree to have this information added to the registry.  Only those individuals who are in a country with the European Union are able to have their details included in the registry.

A more detailed explanation and a consent form can be found on The CATS Foundation website by clicking on the consent form text below:

Consent form

If you are unsure about any of the questions please leave them blank and we will follow up with you at a later date for the answer.

If you have any questions regarding the registry then please contact The CATS Foundation at