Tuesday, July 8, 2008

Press Release: Announcing National Multiple Sclerosis Disease Registry

Congressmen Michael C. Burgess, M.D. (R-Texas) and Russ Carnahan (D-Missouri) [have] introduced bi-partisan legislation to create a national registry to house information about Americans living with multiple sclerosis (MS). A national registry would allow for future planning of health care needs, detect changes in health practices, assess disease burden, promote advocacy, and support a wide range of research initiatives.

“As a medical doctor, I'm focused on improving access to quality health services, breaking down barriers to care, and making medicines more affordable for all Americans, including those living with chronic diseases like MS,” said Congressman Burgess. “Creating a national registry like this one will help achieve those critical goals and provide consistency and coordination in the care of those living with MS.”

Read more from Congressman Burgess.

Read the press release from Congressman Carnahan.


Denver Refashionista said...

Hmmm... I need to think on whether this is a good idea. I wonder if it would be voluntary? I know I'm paranoid but it makes me a little concerned.

ellie said...

I think this is very positive! They are co-chairs of the MS Caucus so they should be knowledgeable. I'm assuming this is one of the outcomes from having the MS caucus. You have to have the facts if your going to ask for the appropriate research dollars,evidence based medical care and quality of life which includes getting people out into the community.

Carol said...

Doesn't sound like a good idea to me. Besides the privacy issues, I'd also be concerned that the information could be used to refuse health insurance.

Diane J Standiford said...

hmmm, good points, but I'm in! I'm never afraid to take on big corporations that discriminate or invade my privacy. We need to be known, don't join if you have fears, there will hopefully be many who sign up. When you get bad enough, then you will join.