If you are a caregiver or a patient with PSP living in the US and Canada - UK soon, you may want to consider checking out allstripes.com/. It will give you all your relevant medical information at the click of your mouse (your consent first) and... information on clinical trials and more. I did, and now have all my medical reports available to me stored safely and securely. AllStripes is a technology based healthcare research platform that deals only with rare diseases - PSP being one. Check it out, and see if it's a right fit for you.
Tim