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MDCC Charter

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Purpose

The Muscular Dystrophy Coordinating Committee (Committee) shall coordinate research activities across the National Institutes of Health (NIH) and with other Federal health programs and activities relating to the various forms of muscular dystrophy, including Duchenne, myotonic, facioscapulohumeral muscular dystrophy and other forms of muscular dystrophy.

Authority

42 U.S.C. 283g, section 404E of the Public Health Service Act, as amended. The Committee is governed by the provisions of the Federal Advisory Committee Act, as amended (5 U.S.C Appendix 2), which sets forth standards for the formation and use of advisory committees.

Function

The Committee shall develop a plan for conducting and supporting research and education on muscular dystrophy through the national research institutes, and shall periodically review and revise the plan. The plan shall (a) provide for a broad range of research and education activities relating to biomedical, epidemiological, psychosocial, and rehabilitative issues, including studies of the impact of these diseases in rural and underserved communities; (b) identify priorities among the programs and activities of the National Institutes of Health regarding these diseases; and (c) reflect input from a broad range of scientists, patients, and advocacy groups.

Structure

The Committee shall consist of not more than 15 members, including the Chair, appointed by the Secretary of Health and Human Services (Secretary). Two-thirds of the members shall represent governmental agencies, including the directors or their designees of each of the national research institutes involved in research with respect to muscular dystrophy and representatives of all other Federal departments and agencies whose programs involve health functions or responsibilities relevant to these diseases, including the Centers for Disease Control and Prevention, the Health Resources and Services Administration, the Food and Drug Administration, and representatives of other governmental agencies that serve children with muscular dystrophy, such as the Department of Education. One-third of the members shall be members of the public, including a broad cross section of persons affected with muscular dystrophies, including parents or legal guardians, affected individuals, researchers, and clinicians. None of these members serve as Representatives. A quorum for the conduct of business by the full Committee shall consist of a majority of currently appointed members. A quorum for each subcommittee shall be three members.

Public members shall be invited to serve for a term of three years, and may serve for an unlimited number of terms if reappointed. Terms of more than two years are contingent upon the renewal of the Committee by appropriate action prior to its termination. Members may serve after the expiration of their terms until their successors have taken office.

The Chair of the Committee shall serve as the principal advisor to the Secretary, the Assistant Secretary for Health, and the Director of NIH, and shall provide advice to the Director of the Centers for Disease Control and Prevention, the Commissioner of the Food and Drug Administration, and to the heads of other relevant agencies. The Committee shall select the Chair for a term not to exceed two years. The Chair of the Committee shall be appointed by, and be directly responsible to, the Secretary.

As necessary, subcommittees may be established to perform functions within the Committee's jurisdiction. The advice/recommendations of a subcommittee must be deliberated by the parent advisory committee. A subcommittee may not report directly to a Federal official unless there is statutory authority to do so.

Subcommittee membership may be drawn in whole or in part from the parent advisory committee. All subcommittee members may vote on subcommittee actions and all subcommittee members count towards the quorum for a subcommittee meeting. Ad hoc consultants do not count towards the quorum and may not vote. Subcommittee members who are not members of the parent committee may attend closed sessions of the parent committee meeting but they may not count towards the quorum of the parent committee and they cannot vote on committee actions.

The Department Committee Management Officer will be notified upon establishment of each standing subcommittee and will be provided information on its name, membership, function, and estimated frequency of meetings.

The Committee may call upon special consultants, assemble ad hoc working groups, and convene conferences and workshops as necessary to assist in the work of the Committee.

Administrative support shall be provided by the Department of Health and Human Services (Department).

Meetings

The Committee shall meet as appropriate as determined by the Secretary in consultation with the Chair. All meetings will be held at the call of the Chair with the advance approval of a Government official, who shall also approve the agenda. A Government official shall be present at all meetings.

Meetings shall be open to the public, except as determined otherwise by the Secretary or other designated official to whom the authority has been delegated; notice of all meetings shall be given to the public.

Meetings shall be conducted and records of the proceedings kept, as required by applicable laws and Departmental regulations.

Compensation

Members shall be paid at a rate $200 for each day that they are engaged in the performance of their duties as members of the Committee. Members shall receive per diem and travel expenses as authorized by section 5703, Title 5 U.S.C., as amended, for persons employed intermittently in the Government service. Members who are officers or employees of the United States Government shall not receive compensation for service on the Committee.

Annual Cost Estimate

The estimated annual cost for operating the Committee, including compensation and travel expenses for members but excluding staff support is $23,200. The estimated annual person-years of staff support required are 0.30, at an estimated annual cost of $35,132.

Reports

The Coordinating Committee shall submit biennially to the Committee on Energy and Commerce of the House of Representatives, and the Committee on Health, Education, Labor, and Pensions of the Senate, a report that describes the research, education, and other activities on muscular dystrophy being conducted or supported through the Department. Each report shall include (1) the research plan developed by the Committee for conducting and supporting research and education on muscular dystrophy through the national research institutes, or revisions to the plan, as the case may be; (2) the amounts expended by the Department with respect to muscular dystrophy; and (3) recommendations of particular projects or types of projects that should in the future be considered by the national research institutes or other research entities on all forms of muscular dystrophy.

In the event a portion of a meeting is closed to the public, as determined by the Secretary of Health and Human Services, in accordance with the Government in the Sunshine Act (5 U.S.C. 552b(c)) and the Federal Advisory Committee Act, a report shall be prepared which shall contain, as a minimum, a list of the members and their business addresses, the Committee's function, dates and places of meetings, and a summary of the Committee's activities and recommendations made during the fiscal year. A copy of the report shall be provided to the Department Committee Management Officer.

Termination Date

Unless renewed by appropriate action prior to its expiration, the Charter for the Muscular Dystrophy Coordinating Committee will expire on August 15, 2008.

Termination Date

________________________       ________________________________
Date                                               Director, NIH

Last updated October 11, 2006