need advice about starting a campaign to institute a national Parkinson's registry. I know the Ali foundation has begun a self-reporting registry, though we have been reluctant to enter all my husabnd's medical info into the system because of the warnings that the site is not secure. and does anyone know if they share that information with all researchers/physicians--or just those with whom they have a relationship?
Has anyone here worked on obtaining registries in individual states--ie california?
would appreciate any help, advice, etc.
seems to me establishing a national--(dare I dream--even international) registry for parkinson's will help tremendously in all aspects of PD research...
thanks, madelyn