Congressmen Michael C. Burgess, M.D. (R-Texas) and Russ Carnahan (D-Missouri)
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."
The
MS Registry will serve as an important source of epidemiological information for
researchers, healthcare providers, patients, and the broader MS community. The
last national study of incidence and prevalence of MS was conducted in 1975.
That lack of core knowledge inhibits MS research, programs, and services.
"By creating a national registry health care providers will be able to
better serve those living with MS and improve research to combat this disease,"
said Congressman Russ Carnahan. "Currently valuable time and effort is being
wasted because smaller databases aren't able to communicate with one another.
This is a simple and common-sense solution, but the benefits are enormous."
The move towards a national MS registry has garnered support from
several health care organizations, including the National MS Society and the
Agency for Toxic Substances and Disease Registry, which is part of the U.S.
Department of Health and Human Services.
"We look forward to working
with our activists across the country in support of the admirable efforts of
Congressmen Burgess and Carnahan," said Joyce Nelson, President and CEO of the
National Multiple Sclerosis Society. "The development of the MS registry will
provide researchers with important information about the incidence and
prevalence of this disease and it represents a giant step in the movement to
achieve a world free of MS," Nelson continued.
According to the Agency
for Toxic Substances and Disease Registry, the absence of a MS registry makes it
more difficult to track cases and restricts local, state, and federal public
health agencies and their capacity to respond to concerns.
Congressman Michael
C. Burgess, M.D. (TX-26)
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