Sign up for
research

Thank you for wanting to help stop Dutchtype CAA!

On this page you will find more information about how to register and what happens after you register. Do you have more questions before you sing up? Maybe you will find answers at the frequently asked questions.

With your registration you indicate that you want to participate in current or future studies. You can participate if you meet one or more of these criteria:

• You are older than 18 years;
• You are a gene carrier or;
• You do not know whether you are a gene carrier, but it is certain that one of your parents or grandparents is or was a gene carrier.

Your wishes and privacy are 100% respected and protected

As part of TRACK DCAA, everyone’s blood is tested for the DCAA gene. It is very important that you do not get to know the result if you do not want to know. Therefore, this information is stored in an encrypted database with a code. This way it is impossible you will 'accidentally' be told whether or not you are a gene carrier. Furthermore, external parties such as mortgage or insurance parties (of course!) do not have access to this sensitive information.

Our patient advocate Sanne van Rijn contacts you first

Sanne van Rijn is a psychologist, patient advocate and part of a DCAA family member herself. Because we know some things are hard to understand for outsiders, she will be there to talk to you about your worries and questions about participating in research. Everything you discuss with her falls under her oath of confidentiality as a psychologist. You can read more about Sanne here. She will contact you within 14 days after signing up. You can also contact her directly: svanrijn@hchwa-d.nl.