If you are a person with PSP, a family member or a caregiver, please consider registering your email address with us by clicking here. This will allow you to receive rapid notification of clinical trials or other opportunities to participate in research. You can also receive notices of PSP-related commercial products, educational programs and patient services.
The registration screen offers the option of receiving only notices of trials or of receiving all notices.
The only information the Registry will ask of you is your email address — no names or anything else. The Registry is maintained by Rutgers Robert Wood Johnson Medical School and not by WordPress, the company that supports the Blog. This means that your email address will be kept with the same security procedures that apply to medical records. It will not be given out to third parties.
Any organization that wants to communicate with you via the Registry has to ask me to forward their email message to you. I wouldn’t send more than one email per week and I would screen them first for anything inappropriate.
To reach the registration screen, click here.
My father passed away Tuesday from a long battle with PSP. Does anyone keep track of those things?
Dear Ms. Kind: Condolences on your loss. We can’t use that piece of information in isolation, but keep an eye on this blog and on http://www.curepsp.org for any calls for information from families of patients. Thank you for offering.