"National MS Disease Registry Act"

Have you ever questioned the NMSS estimate of 400,000 Americans living with multiple sclerosis?  I have.

Read -  ‘‘So How Many People in the US have MS?’’  -  Then come back here to continue.

In April, a bill was introduced in Congress which would provide us with an accurate accounting of the prevalence of MS in the United States in addition to much greater depth of information regarding the disease.

The bill is known as H.R. 5874 - the National MS Disease Registry Act and the following is a summary.

Congress makes the following findings:

1. Multiple sclerosis is a progressive, disabling disease that affects the brain and the spinal cord causing loss of myelin, damage to axons, and cerebral atrophy.
2. MS is a prime-of-life disease with an average age of onset at 30 to 35 years of age.
3. The causes of MS are not well understood.
4. There is no known cure for MS.
5. There are several drugs currently approved by the Food and Drug Administration for the treatment of MS, which have shown modest success in reducing relapses, slowing progression of disability, and limiting the accumulation of brain lesions.
6. More than 10,000 individuals in the United States are diagnosed with MS annually, and it is thought that more than 400,000 individuals in the United States have MS.
7. Studies have found relationships between MS and environmental and genetic factors, but those relationships are not well understood.
8. Several small and uncoordinated MS registries and databases exist in the United States and throughout the world.
9. A single national system to collect and store information on the incidence and prevalence of MS in the United States does not exist.
10. The Agency for Toxic Substances and Disease Registry (ATSDR) has established a series of small pilot studies, beginning in fiscal year 2006, to evaluate the feasibility of various methodologies that might be used to create a MS surveillance system at the national level.
11. The establishment of a national surveillance system will help—

• to identify the incidence and prevalence of MS in the United States;
• to collect data important to the study of MS;
• to produce epidemiologically sound data that can be used to compare with MS cluster information, data sets of the Department of Veterans Affairs data sets, and other information;
• to promote a better understanding of MS;
• to better understand public and private resource impact;
• to collect information that is important for research into genetic and environmental risk factors for MS;
• to enhance biomedical and clinical research by providing a basis for population comparisons; and
• to enhance efforts to find treatments and a cure for MS.

MULTIPLE SCLEROSIS NATIONAL SURVEILLANCE SYSTEM.

ESTABLISHMENT.—

1. IN GENERAL.—Not later than 1 year after the receipt of the Report, the [HHS] Secretary, acting through the Director of ATSDR and in consultation with a national voluntary health organization** with experience serving the population of individuals with multiple sclerosis, shall—

• develop a system to collect data on MS including information with respect to the incidence and prevalence of the disease in the United States; and
• establish a national surveillance system for the collection and storage of such data to include a population-based registry of cases of MS in the United States.

2. PURPOSE.—It is the purpose of the Registry to gather available data concerning—

• MS, including the incidence and prevalence of MS in the United States;
• the age, race or ethnicity, gender, and family history of individuals who are diagnosed with the disease; and
• other matters as recommended by the Advisory Committee.

ADVISORY COMMITTEE.—

1. ESTABLISHMENT.—Not later than 180 days after the date of the enactment of this section, the Secretary, acting through the Director of ATSDR shall establish a committee to be known as the Advisory Committee on the MS National Surveillance System. The Advisory Committee shall be composed of at least one member representing each of the following:

• National voluntary health associations** that focus solely on MS and have demonstrated experience in MS research, care, or patient services.
• The National Institutes of Health, to include, upon the recommendation of the Director of the National Institutes of Health, representatives from the National Institute of Neurological Disorders and Stroke, the National Institute of Environmental Health Sciences, and the National Institute of Allergy and Infectious Diseases.
• The Department of Veterans Affairs.
• The Department of Defense.
• The Agency for Toxic Substances and Disease Registry.
• The Centers for Disease Control and Prevention.
• Patients with MS or their family members.
• Clinicians with expertise on MS and related diseases.
• Epidemiologists with experience in data registries.
• Geneticists or experts in genetics who have experience with the genetics of MS.
• Statisticians.
• Ethicists.
• Attorneys.
• Other individuals, organizations, or agencies with an interest in developing and maintaining the MS National Surveillance System.

2. DUTIES.—The Advisory Committee shall review information and make recommendations to the Secretary concerning—

• the development and maintenance of the MS National Surveillance System;
• the type of information to be collected and stored in the System;
• the manner in which such data is to be collected; and
• the use and availability of such data including guidelines for such use.

3. REPORT.—Not later than 1 year after the date on which the Advisory Committee is established, the Advisory Committee shall submit a report concerning the Review that contains the recommendations of the Advisory Committee with respect to the results of such Review.

GRANTS.—Notwithstanding the recommendations of the Advisory Committee, the Secretary, acting through the Director of ATSDR, may award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for the collection, analysis, and reporting of data on MS.

COORDINATION WITH STATE, LOCAL, AND FEDERAL REGISTRIES.—

1. IN GENERAL.—In establishing the MS National Surveillance System, the Secretary, acting through the Director of ATSDR, shall—

• identify, build upon, expand, and coordinate existing data and surveillance systems, surveys, registries, and other Federal public health and environmental infrastructure wherever possible, including—
  

(i) the 2 MS surveillance pilot studies initiated in fiscal year 2006 by the Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry;

(ii) the MS database of the Department of Veterans Affairs;

(iii) current MS registries, including the New York State MS Registry and the North American Research Committee on MS (NARCOMS) Registry; and

(iv) any other existing or relevant databases that collect or maintain information on neurological diseases identified by researchers or recommended by the Advisory Committee; and

• provide for research access to MS data as recommended by the Advisory Committee to the extent permitted by applicable statutes and regulations and in a manner that protects personal privacy consistent with applicable privacy statutes and regulations.
  

2. COORDINATION WITH OTHER FEDERAL AGENCIES.—Notwithstanding the recommendations of the Advisory Committee, and consistent with applicable privacy statutes and regulations, the Secretary shall ensure that epidemiological and other types of information obtained are made available to agencies such as the National Institutes of Health, the Department of Veterans Affairs, and the Department of Defense.

**For the purposes of this section, the term ‘national voluntary health association’ means a national nonprofit organization with chapters or other affiliated organizations in States throughout the United States.

AUTHORIZATION OF APPROPRIATIONS.—There are authorized to be appropriated to carry out this section $5,000,000 for each of fiscal years 2009 through 2013.