Congressmen Michael C. Burgess, M.D. (R-Texas) and Russ Carnahan (D-Missouri) yesterday 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. 

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