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Have you participated in any clinical studies or trials?
Current research is contributing to our overall understanding of Parkinson’s disease. Different organizations are always collecting and evaluating new data. My dad has participated in a few clinical trials. Have you? If so, what was it like? And was it difficult to get involved?
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7 Replies
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I participated in a PPMI study in New Haven in early December, however apparenty my symptoms were not pronounced enough for their purposes for me to continue with the study.
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No i have not but I would be willing to participate
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I have tried to get onto some of the trials but I must be old or have been on levodopa for too long I realize that they want some people who are younger but I am always available or they think that I am a very bad subject but I keep on having a go. , keep safe everyone George
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Yes, a few, in-person and thru technology. My first neurologist (at a teaching hospital in 2014) gave me my diagnosis and asked if I would like to participate in research. Yes! Of course. I willingly participated in any research that was “looking for a cure”. That was a 3-year trial to ascertain how long a new patient could go without taking CD/LD (Sinemet). It was 1.5 years before I took medication.. I followed each step, learning along the way. Research is my defense and motivation. What is or may be learned may not be accessible to me, but there are more diagnoses of Parkinson’s every day; someone someday will benefit. An on-going trial by the Univ of Rochester is simply tracking daily symptom via Smartphone, done at home, on-line. Every three months you join thru an app and for ten days complete three simple routines of walking, finger dexterity, and tremor increase (or not). Takes about 10 min of your day at a time of your choosing. I have also done 1 day group participation for balance, sensory reactions, trials I hear about thru my support groups, doctor, PD friends. Research is important. If you can participate, please do. Barbara
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No, not yet but i am keen to start.
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No I have not but I have had all symptoms controlled by 1 mg of Azilect a day since starting in fall 2019 after being diagnosed at 57. I had a mild resting tremor, moderate balance issues especially when turning, short term memory, double and blurry vision. The vision issues are due to my left eye turning in, so I just wear reading glasses which help with the blurry vision and I wear my prescription glasses now when watching tv to prevent eye fatigue. Everything else was addtessed within 3 months of starting Azilect. Just saw my Neurologist and he he is impressed with my continued success on the treatment alone for now. So I am keeping myself as stress-free as possible and trying to find the right balance in life.
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I have participated in four clinical trials – three were observational and a forth was interventional (took an experimental drug). While I believe strongly that research is important and that, to make headway in finding effective therapies it is essential that trials be conducted (and I have most definitely “walked the talk”) I have to say that the medical – research industry has a long way to go in order in terms of making trial participation attractive to participants. By that I mean they’ve a considerable distance to go in making people feel like partners in research and more than like laboratory animals. Sure, nursing staff and scientists are polite, considerate, appreciative of your contribution but very little effort is made to make you feel like you’re part of the team.
Let me provide some examples. From the time I signed the Consent Agreement (some questions I had were never answered . . . and the Agreement was a non-negotiable item) I never received a single scrap of paper about the research. No effort was expended either during or after the Trial to tell me the results of the research. I never received a letter thanking me for my participation in a project that extended over 20 months. Never was there a meeting of participants with researchers after the trial was over. I’m quite certain that were I to ask for information about other trial participants I would be told that I would not be given a contact number “for privacy reasons.”
The point I am trying to make here is that with very little effort the things that I mention above would cost very little to implement. If research organizations would give thought to these things, I believe more people – having experienced being treated like a “team player” would be inclined to join subsequent trials, and the recruitment problem might be improved.
Of much greater importance to people in the United States (where a major portion of the world’s clinical trials take place) is the issue of financial risk in the event of a “bad outcome.” Unlike many countries, in the United States, if you participate in a clinical trial and you end up on your back in a hospital bed in long term care, you will get one or two months care from the research organization and then you’re “on your own” insurance and your family has to sue in order to get coverage beyond that initial short period. Read the fine print BEFORE you participate in a trial and decide if you want to take the risk. This lack of coverage / responsibility of research organizations remains a problem that has been discussed by two presidential commissions and remains unresolved. Your doctor probably is not aware of this. You should review Consent Agreements with a lawyer as well as your medical insurance company.
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Hey guys,
Just have a few questions. I have found a good clinic on https://bookinghealth.com/ but need some advice from you.
I’m curious, did you see any long-term effects from any of your trials? It sounds like they could’ve been testing for things like neuroplasticity with the memorization of strange numbers and things like that. Do you feel like you remember things more easily? Have you made any discoveries through the course of these trials?
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