ALS/MND registry

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Wes_E

Member
Joined
Jun 17, 2007
Messages
18
Reason
PALS
Country
US
State
Texas
City
Houston
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

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
Country
BE
State
Belgium
City
Brussels
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
 
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Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I believe they are trying to get a national registry going in the US but don't think it is running yet.
AL.
 

brent

New member
Joined
Jun 14, 2007
Messages
4
Reason
PALS
Country
US
State
wa.
City
burien
wes
i think the site u are looking for is alsconnection.org thay are puting together a registry
 
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