ALS/MND registry

[Wes_E]

Please excuse my ignorance. I have heard there is a registry for PALS. Where is it? What is it? What do they do? Is this the place?:-D

I've spent the last 10 months in denial and running away. It's time to stop that and deal with my anger so I can enjoy the time I have left.

Thanks,
Wes

[Omar]

Hey Wes,

Good that you have decided to go on, fight this disease, and enjoy your life at the same time.

Actually I don't know much about the Registration but while I was joining the patients like me website, I was asked whether I want my data to be included in the Paul Wicks research project which is a project to test whether or not people with ALS/MND registered on that site are a representative sample of the wider ALS population.

Omar

[Al]

I believe they are trying to get a national registry going in the US but don't think it is running yet.
AL.

[brent]

wes
i think the site u are looking for is alsconnection.org thay are puting together a registry

[ZenArcher]

Wes,
If you are a vet the VA has started a registry.

http://www.durham.hsrd.research.va.gov/alsregistry.asp