Was just wondering whether anyone was taking part in any trials?

I was thinking of taking part in a trial. Have not a clue which one, or even how to find what is available.

Have Just joined 23 and Me, which looks interesting but will wait and see. If joining a trial will help, even in a small way, to find a cure for this nuisance, then I am willing to give it a shot. Know it will not help me, but am thinking of my children and grandchildren.

18 Replies

oldestnewest
  • I have taken part in a trial for posture. I spent 2 half days with the researcher in London and I had lots of measurements taken and CT scans of my body; also photos. I think that it is very important to participate at the moment as there are so many people doing research. Unfortunately we may not see the results of this but if it helps others............... it's worth it'

    You can be sure that you can withdraw from the trials if it disagrees with you and you may actually bemefit from a new medication !

  • I am proud to be a volunteer in The Michael J. Fox Foundation study

    at Northwestern University Hospital in Chicago. For more information go to michaeljfox.org/

  • I found 23 and me to the wonderful. I learned so much about my self and my family. I have also taken part in one clinical trial which was disastrous. It was an clinical trial for rifampin. I lost all muscle control on this medicine however I do know others, that have tried other clinical trials apparently successfully.

  • What is 23 and me>

  • 23 &. Me is a wonderful organization in California for Parkinson's persons. They will also take non-Parkinson's people if you absolutely insist.You give a little saliva and they print out your whole DNA, pages. You find what you are at risk for and what you are not at risk for. They update you periodically. They are trying to reach 10,000 people so that they can have DNA from all Parkinson's people, hoping to find a cure & some biomarkers. If you are a Parkinson's patient it costs a small amount, something like $25. If you are not a Parkinson's patient, it cost several hundred dollars. Almost everyone in my support group so far has signed up, including me. I urge everyone who has Parkinson's to sign up. The information you get is extraordinary. Even found out that I was a carrier of a disease that I never knew. Now I told my children not to marry someone with that disease in their family.

  • Thanks for the information. It sounds really beneficial for me as well as for the researchers. Do you have to be a resident of California to participate? How can I get in touch with this organization?

  • No, you do not have to be in California to participate in 23 and Me. I live in the UK. Google 23 and Me. There is nothing to pay if you have Parkinsons.

  • Thanks!

  • I am so please that I (we) have finally found a good combination of meds for me.

    I'm afraid to be part of research and loose my good results.

  • I also do not want to change my meds at the moment. I am more interested in the genetic testing involved. Also I would like to be more up to date with anything new that arises.

  • I've done several. No more involving medication!!! Tomorrow I'm doing a short one involving cognitive testing and they're sending a car service to pick me up :)

  • Over the last 8 years I have participated in at least 10 clinical trials related to PD. Two were involving meds and the rest were exercise ( strength, pilates, tai chi, etc), balance, cognitive, depression and diet related. Each ranged from 2 weeks to 6 months in duration. Currently in study involving effect of vitamin D on PD. Also did "23andme" DNA study. Most trials are though local University Health/Movement disorders Dept as well as Research Institute

  • I joined 23andme have enjoyed my association with the site. I encourage anyone with PD join and submit their saliva for evaluation. Through Michael J Fox I found a study to participate in, testing whether pioglitazone could be neuroprotective for PD. It is currently used for diabetes (which I do not have). I feel great being in the study even though I have to drive a long way to get there. Being in a place where everyone is concerned about PD is a nice experience for me. For me it is important to be part of scientific research no matter how inconvenient. I feel like I'm doing something to fight PD.

  • im starting this month, there doing an MRI and a sleep study but i can sleep. will let everyone know the outcome.

  • As a daughter of a wonderful father with PD I have tried to volunteer for trials as a non Parkinsons control...but they will not accept me because I am a first generation relative. Anyone know of a program in which I can participate?

    .

  • Check Michael J Fox web site Trial Finder. Thanks for trying!

  • Have received my package from 23 and Me. Only had time to look at it quickly. Please tell me that it is not as difficult as it first looks. Will have to read it again when I have time and hope things become clearer then.

    Believe the data you get back is worth the effort so will have to wait and see. At the moment I have not even come across the plastic bag to put the container in. It all looks very professional so assume will find it somewhere. Wish me luck.

  • I joined 23 and me about 2 months ago. I recieved the test kit in the Mail and sent back ...postage was prepaid and there was no cost to me. It was vey interesting and easy to do. I am waiting now to hear back on results and will let you all know. It takes 6 to 8 weeks for all the test to come back...so waiting is the hardest part..I have always been interested in genealogy and we also carry a couple other diseases in our family, which will be interesting to see what I carry. I believe you buy a test kit for $100.00 if you dont have PD, and then a subscription to continue updates on whatever they find, and contnue the comparison of your info to others as it comes in. They will also tell you people you are most likely to be related to and the background of where your ancestors came from...all from comparing your DNA to others. Oh I belive the subscription is $9 a month or something close to that. If you take this as a PD patient it will not cost you anything....check it out and sign up at

    23andme.com.

You may also like...