Parkinson's and Mannitol: For those of you... - Cure Parkinson's

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Parkinson's and Mannitol

MichalKahan profile image
13 Replies

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.

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MichalKahan profile image
MichalKahan
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13 Replies
Xenos profile image
Xenos

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

Keep up the good work.

jeffreyn profile image
jeffreyn in reply toXenos

Me too, at the beginning of each month.

Boyce3600 profile image
Boyce3600

We discontinued due to worsening

MichalKahan profile image
MichalKahan in reply toBoyce3600

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 profile image
Xenos in reply toBoyce3600

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 profile image
MichalKahan in reply toXenos

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

AmyLindy profile image
AmyLindy in reply toMichalKahan

Any updates? I just saw this...

MichalKahan profile image
MichalKahan in reply toAmyLindy

Hו AmyLindy. What do you mean by updates?

AmyLindy profile image
AmyLindy in reply toMichalKahan

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

AmyLindy profile image
AmyLindy in reply toAmyLindy

Your use of mannitol perhaps?

Boyce3600 profile image
Boyce3600

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.

MichalKahan profile image
MichalKahan in reply toBoyce3600

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.

Boyce3600 profile image
Boyce3600 in reply toMichalKahan

Alright. Thank for ur help

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