Parkinson's and Mannitol: For those of... - Parkinson's Movement

Parkinson's Movement
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Parkinson's and Mannitol

MichalKahan
MichalKahan

For those of you who've joined CliniCrowd's (CliniCrowd.info) Mannitol registry, it is crucial that you fill-out the follow up registry on a monthly basis at clinicrowd.info/pd-registry... . This is the only way we all can help the Parkinson's community learn if the Mannitol can help stop the disease degradation.

The registry is also open for those of you that don't take Mannitol . You can use the registries to monitor your disease.

13 Replies
oldestnewest

I do, Michal, on the 10th of each month.

Keep up the good work.

jeffreyn
jeffreyn in reply to Xenos

Me too, at the beginning of each month.

We discontinued due to worsening

Thank you for sharing. Would you mind reporting in the follow up registry. This is important as improvements reporting, as we want to get the real picture. Since the registry is also open for those that do not take Mannitol, it would be very helpful if you report that you stopped due to worsening. Thank you !

Xenos
Xenos in reply to Boyce3600

It has been reported that there can be some regression for a few weeks or months after an initial improvement. It then would take a few weeks - as far as I remember - before steady improvement to take place.

I guess it's too early for CliniCrowd to draw serious conclusions, statistically speaking. But informing them is essential.

MichalKahan
MichalKahan in reply to Xenos

You are right, it is too early. We need more participants to fill out on a monthly-base the follow up registry

AmyLindy
AmyLindy in reply to MichalKahan

Any updates? I just saw this...

MichalKahan
MichalKahan in reply to AmyLindy

Hו AmyLindy. What do you mean by updates?

AmyLindy
AmyLindy in reply to MichalKahan

I can't remember -ha, updates to whatever you were trying when I posted that reply. It should be chronological?

AmyLindy
AmyLindy in reply to AmyLindy

Your use of mannitol perhaps?

I can try but when i initially tried to register after answering all the questions and getting to the last submit button it did not respond and i lost everything. This happened twice.

Oh .. sorry to hear that, we can try to help, please send our customer support an email and the software can try to track the incomplete registry and send you a link to complete it. Please send an email to info@clinicrowd.info from the email you registered. If you recall the date (more or less), please mention it in your email, that can also help. Thank you.

Alright. Thank for ur help

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