STUDY

[Danasr]

Has anyone been involved in any studies?? If so, what kind...just curious.

[FMundo]

I assume when you say "studies" you mean "clinical trials". I have been involved in two:

1. An "observational" trial, conducted by Michael J. Fox organization using Pebble watch to collect and upload medication timing and tremors.

2. An "interventional" Phase II Trial with the repurposed drug Nilotinib conducted by Georgetown University to determine efficacy of drug in slowing Parkinsons (currently underway)

[Hidden]

I am currently involved in a study of gut bacteria in people with Parkinson's. It is just a matter of answering long lists of questions about lifestyle and diet, and stool samples 6 months apart. I have been a lacto-vegetarian since 1973 and since being diagnosed with Parkinson's have concentrated on trying to help my gut bacteria, as well as taking Sinemet.

[Danasr in reply to Hidden]

Thanks, I’m just curious. I have contemplated it since I’m newly diagnosed and not taking Levdopa there are a lot of trials that I could get into but I’m a little afraid.

[Oceanflow in reply to Hidden]

I have been a participant in the same, or a similar study - was the one you participated in at UBC in Vancouver, Canada?

[Hidden in reply to Oceanflow]

Oceanflow, no it is in Australia.

[SELFMeder]

I am mimicing 2 national double-blind trials being orchestrated by Mass General: Inosine and NAC. Both are in their second year.

I am taking Inosine and NAC at the experiment group level on my own. Waiting to see what outcomes of these stage (3) trials will generate.

Would like to know if anyone is aware of other advanced stage trials are on going.

[Danasr in reply to SELFMeder]

Thanks

[Juliegrace]

I have participated in both observational and interventional research and would do it again. There are plenty of studies that are non-interventional, or for supplements that are looking for drug naive participants. If you register for Fox Insight you can do some online surveys which are used for research. Also, I believe 23 and Me is still collecting DNA from PWP; offering their service for free to PWP. Those are two ways to be helpful without a scary commitment.

[Oceanflow]

Our Parkie community needs us - and our friends who don't have PD - to participate in studies to help us get to the goal of finding a cure, or treatments that slow progression. I hope you will decide to participate in any you deem worthwhile.

[Danasr]

I am currently involved in an observational Fox trial & 23 & Me. I haven’t been able to qualify for any others b/c I am taking Selegeline.