The ACD is proud to partner with Invitae to provide a secure patient registry for CCDS information known as the “Patient Insights Network” or PIN. Sharing health information through a patient registry allows doctors and researchers to gain valuable data that can help support future CCDS breakthroughs and treatments.
Why join the PIN? It is important to collect information from as many CCDS patients as possible to best understand the history and progression of CCDS, to provide start points for researchers wishing to study CCDS, to connect patients and families with opportunities for clinical trials and eventually treatments, and to enable advocates to accurately speak on behalf of the CCDS community.
Check out these FAQ’s for more info.