New member

[pandyjohn]

I have recently been diagnosed with PSP so I want to be kept informed of any new research.

John Clarke

[Dadshelper]

Welcome to the site. I'd use the search feature at top of page and look for trials. I think there's a couple going on but I have no clue as to where.

Ron

[easterncedar]

Welcome, John. Although sorry for your diagnosis, it's good you have found this site. There's lots of information and support to be found here. Although there isn't yet much in the way of treatment available, except for some symptoms as they arise, there is a lot of research going on, and I believe there a breakthroughs coming soon. Although PSP is rare, that it it a straight tau protein disorder makes it a subject of interest to researchers who are interested in that particular aspect of other diseases that have a more complicated profile.

Ask anything; someone here is bound to have an answer. You might look at DaddyT's and Bargiepat's posts for the shared perspective.

Wishing you the best,

Easterncedar

[Hidden]

Depending on what country you are in there are clinical trials to participate in if you want to go that route.

[Kristin447]

Hi I'm not sure where you are from but my husband Dave who is 53 and dx with PSP live in the Boston area but the current clinical trials are full so I found one in NY, its the Arise study by Abvie at Columbia Univ. in New York. Here is the contact information:

Solciris A. Dominguez

Clinical Research Coordinator

Staff Associate

Taub Institute for Research on Alzheimer's Disease and the Aging Brain, GH Sergievsky Center, Department of Neurology

Columbia University College of Physicians and Surgeons

630 West 168th Street P&S Unit 16

New York, NY 10032-3795

Phone number: 212-342-2380

Fax: [phone]

Email: [e-mail]

I emailed them and first asked if they were still accepting patients and then they asked me to forward all the medical records I had. Luckily I had everything scanned to my computer and didn't have to wait to receive them from the hospital/doctor. After they reviewed them (which took only 24 hrs.) they set us up with a screening visit.

Best of luck and I"m sure you will find this site very helpful!

Kristin

[enjoysalud]

John, there are different health care systems, drug laws, and costs in different parts of the world. It would be helpful if you to were to list what country you reside in on your profile or each time you post.

Regarding your interest in clinical trials I would suggest that you Google: Biogen and AbbVie clinical trails for PSP. Also if you enter those clinical trials in the "search HealthUnlocked" bar at the top of this page, participants in this site who have posted on those two clinical trials will pop up.

Good luck.

Los Angeles, CA, USA

[raincitygirl]

Welcome and best of luck to you John

There are a number of psp-diagnosed members hre and their participation is always valuable. To single out one of them, check out Daddyt who has published a blog and a book and has a Facebook page too! He really makes his experience come alive on the page.

Anne G.

[cameoboy11]

Hi i have been diagnosed with CBD and in UK. I have signed up for the PROSPECT trial carried òut by univesity of London. Good luck snd welcome to the site Jo x

[katras]

Welcome to the site, John.

It would help to know where you live. I am a Psp patient who lives in the Portland, OR area and participating in the Abbvie clinical trial being done here. I believe the Mayo Clinic locations in Minnesota, Arizona and Florida are also doing that one as well as a location in Chicago.

Good luck to you.

Kathy

[Christine47]

This is a new clinical trial. A clinical study with an experimental study drug being conducted right now sponsored by the pharmaceutical company Abbvie. Visit TheAriseStudy.com

[grafixapn]

I'm in the USA and our local PSP support group has a free website that should answer most of your questions. The website is supportpsp.com

The website only contains helpful information. It was put up to make it easier for us when we got a new member. We no longer had to print over 10 pages double sided as a hand-out.

The one thing you will quickly learn is you need all the help you can get. Being a caregiver isn't easy. Many on this site understand where you are.

I'm a caregiver for my wife who has PSP. Just remember you are not alone.

Andy