Today I officially ended a 10-year stint on the Scientific Advisory Board of the Frontotemporal Dementia Disorders Registry (FTDDR).  It maintains a list of people with the “FTD disorders,” loosely defined to include PSP and corticobasal degeneration as well as the standard forms of FTD.  The FTDDR is the only widely-available registry for PSP and collaborates closely with CurePSP.  It is supported financially by the Rainwater Charitable Foundation, which provides generous funding and infrastructure support for research on tau-based disorders, especially PSP. 

Registering with the FTDDR would allow you to contribute information on your condition to a powerful tool for researchers, philanthropists, government policymakers and patient support organizations.  It could serve to introduce you to drug companies and academic researchers seeking patients for treatment trials or observational (i.e., non-treatment) research.  Of course, you can choose which information about yourself to include and not to include, and you can opt out of consideration for treatment trials if you like. 

The registry is designed to safeguard your confidentiality. When the registry personnel supply data to outside organizations , the registrants’ identifying and contact information is stripped away first. If an outside organization wishes to contact contact you about a research project, the registry office would manage that for them. In that way, you could decline without revealing your identity to the outside organization.

I highly recommend that you register.  Just go to https://ftdregistry.org/ and follow the instructions.