[olsen]

(from the MDA--muscular dystrophy association--research news feature)

(Does anyone else feel there needs to be a Parkinson's Disease Registry just like the ALS registry --I assume the ALS registry Act was passed by Congress--though I may be incorrect about that. I know the Ali Center has a PD patient voluntary reporting registry, though we have not used it because of the notice that the site was not secure.)

ALS Registries Yield Data, Research Leads
Do people with amyotrophic lateral sclerosis (ALS) who are treated at large medical centers with specialty clinics fare better than those treated by community physicians?

That’s one of many questions that investigators are attempting to answer by analyzing data gathered in the ALS CARE (Clinical Assessment, Research and Education) database (www.outcomes-umassmed.org/als), funded by a grant from the pharmaceutical company Sanofi-Aventis, and the ALS Connection registry (www.ALSconnection.org), funded by MDA.

Neurologist Robert Miller, who directs the MDA/ALS Center at California Pacific Medical Center in San Francisco, chairs the advisory board for the paper-based ALS CARE registry, which is designed to gather statistics on patients treated at major medical centers, and has an MDA grant to oversee the Web-based ALS Connection (www.ALSconnection.org), which is designed to assess ALS care practices outside major centers.

ALS CARE, launched in 1996, now has data from more than 6,000 ALS patients.

“We have learned a lot about what treatments patients are using, whether the treatments were useful, and also whether the evidence-based guidelines approved by the American Academy of Neurology are being followed,” Miller says.

Unexpected research leads have also been generated from ALS CARE.

“For example,” Miller notes, “the finding that 35 percent of ALS patients in the program were veterans was a big surprise and led to a whole series of studies about the risk of ALS in veterans of military service, which have been very fruitful.”

ALS Connection began collecting data in January and now has almost 200 patients. Individual patients can’t be identified from either registry.

Miller encourages patients attending MDA clinics or ALS centers to register with ALS CARE, for which a physician’s participation is needed; and patients being cared for primarily by community-based physicians to register online with the ALS Connection.

“This is a chance for all persons with ALS to participate in research that will lead to an improved standard of care,” he says.

(again, I apologize for lack of link--problem with address bar continues)