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.

3 thoughts on “Registry

  1. Hello, my father has PSP. I am curious if you know about the failed Biogen Alzheimers trial in March. Did the PSP trials sink with the Alzheimers ship, or are they still active?

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s