BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
(Apparently the funding bill went through?) I'm sure others received this e-mail from MDA, but for those who didn't:
Government announces plans for national ALS Registry in 2010
The federal government has released preliminary details about the new National ALS Registry, which will be launched in late 2010. The National ALS Registry was funded by the federal government in 2008, following passage of the ALS Registry Act. It will scientifically collect, manage and analyze information about people with ALS to help researchers better understand the disease.
Registry data will be used to estimate the incidence and prevalence of ALS, promote a better understanding of how the disease develops and provide data to researchers about improving disease management and developing better standards of care.
A list of frequently asked questions (FAQs) about ALS and the registry can be viewed online at CDC - Amyotrophic Lateral Sclerosis.
Welcome to MDA-ALS Division, Helping Jerry's Kids
Scott Wiebe
Director - Outreach Initiatives & ALS Division
World Leader in ALS Research and Services
(Hope I live long enough to get on it ... and maybe hear some preliminary results!)
Government announces plans for national ALS Registry in 2010
The federal government has released preliminary details about the new National ALS Registry, which will be launched in late 2010. The National ALS Registry was funded by the federal government in 2008, following passage of the ALS Registry Act. It will scientifically collect, manage and analyze information about people with ALS to help researchers better understand the disease.
Registry data will be used to estimate the incidence and prevalence of ALS, promote a better understanding of how the disease develops and provide data to researchers about improving disease management and developing better standards of care.
A list of frequently asked questions (FAQs) about ALS and the registry can be viewed online at CDC - Amyotrophic Lateral Sclerosis.
Welcome to MDA-ALS Division, Helping Jerry's Kids
Scott Wiebe
Director - Outreach Initiatives & ALS Division
World Leader in ALS Research and Services
(Hope I live long enough to get on it ... and maybe hear some preliminary results!)