With your help, we collect ongoing information regarding Mannitol efficacy, usage, frequency and side effects. In addition we gather information about symptoms, medication, nutrition, exercise and more.
From the data collected to date, we know that some people reported rapid improvement, while others, only after a few months. Some did not feel any change, yet their caregivers or family members did notice improvement. Other improvements were noted during annual medical visits.
Our objective is to examine whether Mannitol can stop the deterioration of the disease and this requires patience from us all.
Please note:
To make the registry more efficient, please add a monthly reminder to your calendar to fill out the Follow-up Registry.
We recommend that each participant fill out at least 8 follow-up registries per year.