FACA

Note: An Annual Comprehensive Review, as required by §7 of the Federal Advisory Committee Act, is conducted each year on committee data entered for the previous fiscal year (referred to as the reporting year). The data for the reporting year is not considered verified until this review is complete and the data is moved to history for an agency/department. See the Data From Previous Years section at the bottom of this page for the committee’s historical, verified data.

Details on agency responses to committee recommendations can be found under the Performance Measures section for each committee in the fields “Agency Feedback” and “Agency Feedback Comment.”

HHS - 13889 - Muscular Dystrophy Coordinating Committee - Statutory (Congress Created)

GENERAL INFORMATION

Committee Name	Muscular Dystrophy Coordinating Committee	Agency Name	Department of Health and Human Services
Fiscal Year	2021	Committee Number	13889
Original Establishment Date	12/18/2001	Committee Status	Chartered
Actual Termination Date		Committee URL	https://mdcc.nih.gov/
New Committee This FY	No	Presidential Appointments*	No
Terminated This FY	No	Max Number of Members*	18
Current Charter Date	8/15/2020	Designated Fed Officer Position Title*	Program Director, Extramural Research Program
Date Of Renewal Charter	8/15/2022	Designated Federal Officer Prefix
Projected Termination Date		Designated Federal Officer First Name*	Glen
Exempt From Renewal*	No	Designated Federal Officer Middle Name
Specific Termination Authority		Designated Federal Officer Last Name*	Nuckolls
Establishment Authority*	Statutory (Congress Created)	Designated Federal Officer Suffix	PHD
Specific Establishment Authority*	42 USC 283g, section 404E	Designated Federal Officer Phone*	(301) 496-5876
Effective Date Of Authority*	12/18/2001	Designated Federal Officer Fax*	(301) 402-1501
Exempt From EO 13875 Discretionary Cmte	Not Applicable	Designated Federal Officer Email*	glen.nuckolls@mail.nih.gov
Committee Type*	Continuing
Presidential*	No
Committee Function*	Scientific Technical Program Advisory Board

RECOMMENDATION/JUSTIFICATIONS

Agency Recommendation*	Continue
Legislation to Terminate Required	Not Applicable
Legislation Status	Not Applicable
How does cmte accomplish its purpose?*	The Muscular Dystrophy Coordinating Committee (MDCC) coordinates research activities across the National Institutes of Health, with other Federal health programs and voluntary health organizations, and activities relating to the various forms of muscular dystrophy, including Duchenne, myotonic, fasioscapulohumeral muscular dystrophy. The Committee has developed a plan for conducting and supporting research and education on muscular dystrophy through the national research institutes and other member organizations of the MDCC. The Committee will determine strategies for implementation of the plan, and will periodically review and revise the plan.
How is membership balanced?*	The Muscular Dystrophy Coordinating Committee consists of 18 members, including the Chair. Two-thirds of the members represent governmental agencies, including the directors or their designees of four of the national research institutes that support muscular dystrophy research, representatives of other Federal departments and agencies whose programs support research on the muscular dystrophies or provide services to people with these diseases including the Centers for Disease Control and Prevention, the Health Resources and Services Administration, the Food and Drug Administration, the Administration for Community Living, the Social Security Administration, the Centers for Medicare and Medicaid Services, the Department of Defense, and the Department of Education. One-third of the members are public members, including representatives from voluntary health organizations.
How frequent & relevant are cmte mtgs?*	As described in the MD CARE Act (P.L. 107-84), the Muscular Dystrophy Coordinating Committee meets at least twice each year. The committee met two times during this reporting period. The committee met in November 2019 and June 2020. Meeting topics are selected with input from Committee members and are chosen for their relevance to the patient and research communities.
Why advice can't be obtained elsewhere?*	The Muscular Dystrophy Coordinating Committee is composed of both representatives of Governmental agencies and public members who have developed a plan for conducting and supporting research and education on muscular dystrophy. The formation of the Committee was mandated in the MD-CARE Act (P.L. 107-84). The Committee will periodically review and revise the plan and will discuss ways to further coordinate activities across the NIH, with other Federal health programs and voluntary health organizations relating to the muscular dystrophies. There are no other committees with the representation and experience of the MDCC.
Why close or partially close meetings?	N/A
Recommendation Remarks	This committee did not produce any public reports during the fiscal year. Members: Dr. Walter Koroshetz's term was updated to reflect an administrative extension as Chair on the committee. Dr. John Porter resigned from the committee and his end date was updated to 12/31/2020 . Start terms were updated for 4 members (Kiley, Jillapalli, San Agustin, and Perez). Incorrect start terms were listed on last year's report. Dr. Stephen Katz passed away on 12/20/18, therefore, he was included on the FY 2019 report but is not listed on this FY 2020 report. Note: The COVID-19 pandemic started in March 2020, which required that the June MDCC meeting be held virtually in this fiscal year.

PERFORMANCE MEASURES

Outcome Improvement To Health Or Safety*	Yes	Action Reorganize Priorities*	Yes
Outcome Trust In Government	Yes	Action Reallocate Resources	No
Outcome Major Policy Changes	No	Action Issued New Regulations	No
Outcome Advance In Scientific Research	Yes	Action Proposed Legislation	No
Outcome Effective Grant Making	No	Action Approved Grants Or Other Payments	No
Outcome Improved Service Delivery	No	Action Other	No
Outcome Increased Customer Satisfaction	No	Action Comment	NA
Outcome Implement Laws/Reg Requirements	Yes	Grants Review*	No
Outcome Other	No	Number Of Grants Reviewed	0
Outcome Comment	NA	Number Of Grants Recommended	0
Cost Savings*	None	Dollar Value Of Grants Recommended	$0.00
Cost Savings Comment	Basic and clinical research accomplishments, as supported by MDCC member organizations, often take many years to unfold into new diagnostic tests and new ways to treat and prevent diseases. Coordinated efforts by the committee allow for screening and prevention of overlapping support for research projects.	Grants Review Comment	NA
Number Of Recommendations*	2	Access Contact Designated Fed. Officer*	Yes
Number Of Recommendations Comment	During the two FY2020 meetings of the MDCC, the committee discussed progress on sub-recommendations from the committee’s Action Plan for the Muscular Dystrophies (published 2015 at mdcc.nih.gov). The November 2019 meeting focused on Patient-Focused Research and the June 2020 meeting was on Patient-Reported Outcome Measures. Though presentations and discussions, the committee assessed progress on the Action Plan recommendations and strategies to accelerate progress. This has not led to new recommendations, but enhances the committee members’ understanding of current obstacles and enables them to work through their agencies and organizations to overcome the obstacles.	Access Agency Website	Yes
% of Recs Fully Implemented*	45.00%	Access Committee Website	Yes
% of Recs Fully Implemented Comment	The Action Plan describes various research objectives that will take decades or longer to complete. NIH is currently supporting and will continue to support research grants that address approximately 70% of the topics in the Action. Approximately 30% of the Action Plan relates to topics that are beyond the mission of the NIH, but relevant to other federal agency and voluntary group members of the MDCC. Approximately 45% of the objectives of the Action Plan have been the primary topics of funded NIH grants.	Access GSA FACA Website	Yes
% of Recs Partially Implemented*	45.00%	Access Publications	No
% of Recs Partially Implemented Comment	Funding opportunities are active at NIH and other public and private MDCC member organization that can be used to support many of the objectives of the action plan that are not yet fully implemented. These objectives are considered partially implemented if funding is available or if research has begun but goals have not yet been achieved.	Access Other	No
Agency Feedback*	Yes	Access Comment	The MDCC website is located at: https://mdcc.nih.gov/. The website contains information about Committee membership, past and upcoming meetings, and contains a link to the Research and Education Plan for MD.
Agency Feedback Comment*	Memoranda to and regular communication with Committee members.	Narrative Description*	The formation of the Muscular Dystrophy Coordinating Committee (MDCC) was mandated by the MD-CARE Act (P.L. 107-84). The purpose of the MDCC is to 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. As required by law, the function of the MDCC is to develop a plan for conducting and supporting research and education on muscular dystrophy through the national research institutes and periodically review and revise the plan. The MDCC has developed a research and education plan for the muscular dystrophies for NIH. This plan lays out research goals for advancing research and treatments for the muscular dystrophies. The MDCC also has developed an Action Plan that identified key activities to be undertaken by the broader muscular dystrophy community (governmental organizations, advocacy groups, and academic and corporate investigators). This Action Plan is used as a means to identify and coordinate key activities.

COSTS

Payments to Non-Federal Members*		Est Payments to Non-Fed Members Next FY*
Payments to Federal Members*		Est. Payments to Fed Members Next FY*
Payments to Federal Staff*		Estimated Payments to Federal Staff*
Payments to Consultants*		Est. Payments to Consultants Next FY*
Travel Reimb. For Non-Federal Members*		Est Travel Reimb Non-Fed Members nextFY*
Travel Reimb. For Federal Members*		Est Travel Reimb For Fed Members*
Travel Reimb. For Federal Staff*		Est. Travel Reimb to Fed Staff Next FY*
Travel Reimb. For Consultants*		Est Travel Reimb to Consultants Next FY*
Other Costs		Est. Other Costs Next FY*
Total Costs	$0.00	Est. Total Next FY*	$0.00
Federal Staff Support (FTE)*		Est. Fed Staff Support Next FY*
Cost Remarks		Est Cost Remarks

Interest Areas

Category Area Food and Drugs Food and Drugs Health Health Care Treatment

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Committee Level Reports