[jeanb]

I'm going to Yale at the end of this month for SPECT scan #4 as part of a clinical trial. This may be the last one - 4 scans over the past years: 2003-2005-2007-2009 This SPECT scan trial started in conjunction with the first trial I joined in 2003 - shortly after my diagnosis.

For pwp interested in learning all about clinical trials and the process, I recommend you look into PDF's clinical research learning institute. Tomorow - July 17 - is the deadline for applications!!

http://www.pdf.org/en/crli

[pegleg]

Another place to find out if a trial is suited for you is www.PDTrials.org .

PDTrials is the website affiliated with APT (Accelerating Parkinson's Therapies), a collaboration of PD organizations and foundations to help with trial recruitment, retention, and just plain ole educating folks to the process.

Peg

[jeanb]

I"m leaving the Phoenix heat for cooler weather at Yale for the SPECT scan trial this Monday. They will also send a companion with the trial participant - so this time my cousin from Chicago is going to come and will meet me at JFK. (I've always gone alone before)

Anyway my cousin has MS and I've arranged a wheelchair for her to be waiting for us at the hotel. But we're looking forward to a couple of days together. And I"m looking forward to cooler weather.

My hope is that this brain scan technique will eventually be approved by the FDA as a diagnostic tool for PD. Scientists will have scans for 400 of us who started in 2003 and every other year to 2009. (And eventually I"ll get copies of all the scans.) I'm proud that my participation is adding to scientific knowledge about PD.

[pegleg]

it sure would be a plus to have a specific test designed to verify a dx of PD. It might scare us to death to know how many have been misdiagnosed.
Peggy

[jeanb]

Peg

I remember when the cep-1347 trial was unblinded and we got to see our first 2 brain scans. As my doctor said, the scans confirmed her diagnoses of PD for her trial participants - she had NOT mis-diagnosed anyone.

[pegleg]

Jean said:
As my doctor said, the scans confirmed her diagnoses of PD for her trial participants - she had NOT mis-diagnosed anyone.

That is amazing! I believe that some doctors are a bit anxious to fill clinical trial slots, and in doing so may enroll some who have been misdiagnosed. In my opinion, that can really hurt trying to get a treatment approved.

It sounds as if you found a very professional and conscientious doctor.
Peg

[jeanb]

I'm lucky to have such a wonderful doctor. She spends about half of her time as a researcher, and when she suggests a clinical trial for me to join, I consider it seriously. In the next month or two there will be a second clinical trial trying to identify biomarkers for PD that my husband & I will participate in. My husband is proud of his clinical trial participation, too!

[Stitcher]

Funny, I woke today with clinical trials on my mind and was thinking that anytime a patient in considering participating in a trial the person should do two things:

1. Consult the Internet and study up on the research behind the trial; i.e. ClinicalTrials.gov and PDTrials.org (as Peggy pointed out). And there is always the Parkinson Pipeline Project database
2. Read the PDF booklet which is available for free, in print or in pdf format, or both, What are the Questions to Ask?

[Stitcher]

Peggy and Jean, should all PD patients have a SPECT scan at diagnosis to ensure no mis-diagnosis?

[pegleg]

Carolyn
To answer your question of whether or not every patient should have a SPECT scan - I would say "no." This scan does not "prove" the dx of PD . . . yet (and it is extremely expensive). Such diagnostic testing is still under study.

I do believe, however, that if there is any question about a diagnosis, a SPECT scan wouldn't be a bad idea, but you would probably have to pay for it out-of-pocket.

What's your take, Jean?

Peg