We just passed 4,000 Parkinson's patients that are crowd testing Mannitol by themselves, for themselves and for the world ! Thanks for all the Parkinson's Movement members who decided to join clinicrowd.info and contribute their results.
New patients , please take a look at the channel 1 article about Mannitol and Parkinson's youtube.com/watch?v=0MfO3Wy... and learn more about the crowd registry at clinicalcrowd.info
Hi, are there any results back yet? Thanks
With such a dramatic intro, I thought "the world" was about to get an update. Instead we're left with the same outdated Mannitol/website promo to replay (yawn).
I agree
I won't open then
mannitol seemed like a reasonable test, 10 grams per day. 5months in and nothing to report I have brought the great mannitol experiment to an end. just another let down
Hi Ranico,
About 3 months ago you said:
"We will present the data when it is statistically significant and when we finish the user interface. We expect that to happen in 3-4 month ...".
Are you still on track to release some initial results within the next month or so?
Jeff
Have any of the people who are making snarky comments or complaining that there are no results available after months participated in research before? It usually takes YEARS for information to come out of any study. And those studies are organized and funded. This clinicrowd effort is unique (in my experience) and still finding it's feet, IMO. 23andme.com took years to enroll the 10,000 PWPs they sought, and then gather enough data to be useful for research and they are funded by one of the Google founders! PD is much harder to study than a static disease that affects everyone the same way. The focused ultrasound study for Essential Tremor received FDA approval as a treatment in 3 years, which is an amazingly short time. They were hoping to fast track it as a treatment for PD in a two-year study, but because PD is a moving target and everyone is different, they are expanding the study because the results are all over the board. I know this because I am one of the participants.
Ranico, that said, I am frustrated with the clinicrowd website and find it cumbersome and slow. It should be much easier to use, especially considering that many of us are compromised some or all of the time. I think updates on the website would be good; the blog has not been updated since Nov. 2016.
I at have a friend who has Parkinson's she started taking 1 tsp in the morning and one at night, the 2nd month she changed it to 1 tbsp. She is sleeping much better, she said she is having better days and I noticed how much faster she is walking.
Have filled out all sorts of assessments on this site, but can never get any information on the mannitol trial or recommendations for participating in it. Thanks to volunteers who are trying to run the site, but you need help!
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