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07-16-2009, 06:54 AM | #1 | |||
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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
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. Last edited by jeanb; 07-16-2009 at 06:57 AM. Reason: typeos & date |
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"Thanks for this!" says: | lizzy4451 (07-21-2009), rose of his heart (07-16-2009) |
07-16-2009, 09:39 PM | #2 | |||
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Senior Member
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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 |
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"Thanks for this!" says: | lizzy4451 (07-21-2009) |
07-24-2009, 11:36 PM | #3 | |||
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Senior Member
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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.
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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"Thanks for this!" says: | girija (07-25-2009) |
07-25-2009, 08:07 PM | #4 | |||
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Senior Member
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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 |
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07-25-2009, 09:32 PM | #5 | |||
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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.
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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07-25-2009, 09:48 PM | #6 | |||
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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 |
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07-25-2009, 09:52 PM | #7 | |||
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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!
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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07-26-2009, 08:00 AM | #8 | |||
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Magnate
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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:
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You're alive. Do something. The directive in life, the moral imperative was so uncomplicated. It could be expressed in single words, not complete sentences. It sounded like this: Look. Listen. Choose. Act. ~~Barbara Hall I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller |
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07-26-2009, 08:03 AM | #9 | |||
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Magnate
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Peggy and Jean, should all PD patients have a SPECT scan at diagnosis to ensure no mis-diagnosis?
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You're alive. Do something. The directive in life, the moral imperative was so uncomplicated. It could be expressed in single words, not complete sentences. It sounded like this: Look. Listen. Choose. Act. ~~Barbara Hall I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller |
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07-26-2009, 08:12 AM | #10 | |||
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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 |
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