Debi
This is music to my ears. It has been far too long since a really new medication has been created just for Parkinson's. Most all have been something to extend the life of levodopa/carbidopa, the gold standard of treatment for over 40 years. I am hopeful that the results of the PPMI study will turn this thinking around.

Big pharma should take note how a change in treating Parkinson's has already resulted in a blockbuster - with Medtronics' debut of Deep Brain Stimulation (DBS). Another plus for Medtronics has also been that it has shown to be effective in some cases of dystonia and dyskinesia.

So what can the PD community do to help endorse and support collaborative efforts like Pfizer and universities?
The companies need to do human testing so WE NEED VOLUNTEERS FOR CLINICAL TRIALS!

I know one such source of trial info specific to PD can be found at www.pdtrials.org

Have you done your part?

Thanks, Peggy

Most clinical trials are NOT for new drugs, if that is holding people back. If there are clinical trials going on in your community - I hope people who visit this board will go on line to see what trials are going on there. I am always perplexed at the unending complaints about lack of new treatments versus the small number of PWP who choose to be a part of the process.

www.clinicaltrials.gov search on parkinson's disease

Jean B

Well said, Peggy and Jean.
If you sign up for a study and change your mind later, you are not committed to participate to the end of the study.
When I had a unilateral DBS/STN done in '06, I allowed my NSU to insert a new designed lead (multi contacts)and "play around" with it before they put in the approved lead. They also put a hot wired glove on my affect hand and play video games while in the operating room. Also requested that they call my husband from the OR to have a cold margarita waiting for me when I got back to my room. They did but my husband didn't.

There is now apparently a new multi contact lead out there - the source I would have to look up. Unfortunately, DBS precludes you from most studies.
TG

TG - I hadn't heard about the DBS multi-color lead - what is its benefit?

A guy in our support group went to a VA in Virginia and is testing a new 9-year battery! I think 3-5 years was previously the life (of the battery lol)

It was a big decision (and still is) t o do a clinical trial requiringn brain surgery - not just the risks, but it usually excludes you from other trials. Why? Because if you have had something surgically implanted, the new treatment may cause problems (like an interaction) or the research will not be able to tell if it was the implant or the new treatment.

Jean - how many trials have you been in? I think all total, I have been in 4 - and one was surgical.
Peg

Peg,

I think around 10 clinical trials for me. The first one lasted 2 years for a new drug. (I joined that first trial 6 months after my diagnosis) Then follow-on trials/studies including SPECT scan trial, and 2 trials with my husband (as control) for biomarkers.

My doctor is also a researcher and they call me if there is a study that I qualify for.

Jean