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Committee Detail

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.


HHS - 1026 - Sickle Cell Disease Advisory Committee - Authorized by Law
Hide Section - GENERAL INFORMATION

GENERAL INFORMATION

Committee NameSickle Cell Disease Advisory CommitteeAgency NameDepartment of Health and Human Services
Fiscal Year2020Committee Number1026
Original Establishment Date11/17/1962Committee StatusChartered
Actual Termination Date Committee URLhttps://www.nhlbi.nih.gov/advisory-and-peer-rev...
New Committee This FYNoPresidential Appointments*No
Terminated This FYNoMax Number of Members*18
Current Charter Date6/30/2019Designated Fed Officer Position Title*Director, Division of Blood Diseases and Resources
Date Of Renewal Charter6/30/2021Designated Federal Officer Prefix
Projected Termination Date Designated Federal Officer First Name*W
Exempt From Renewal*NoDesignated Federal Officer Middle NameKeith
Specific Termination AuthorityDesignated Federal Officer Last Name*Hoots
Establishment Authority*Authorized by LawDesignated Federal Officer SuffixMD
Specific Establishment Authority*42 U.S.C. 282(b)(16)Designated Federal Officer Phone*(301) 435-0080
Effective Date Of Authority*11/4/1988Designated Federal Officer Fax*(301) 480-0868
Exempt From EO 13875 Discretionary CmteNot ApplicableDesignated Federal Officer Email*hootswk@nhlbi.nih.gov
Committee Type*Continuing
Presidential*No
Committee Function*Scientific Technical Program Advisory Board
Hide Section - RECOMMENDATION/JUSTIFICATIONS

RECOMMENDATION/JUSTIFICATIONS

Agency Recommendation*Continue
Legislation to Terminate RequiredNot Applicable
Legislation StatusNot Applicable
How does cmte accomplish its purpose?*The Sickle Cell Disease Advisory Committee is composed of highly qualified individuals with expertise in the areas of basic and clinical research, translational science, genetics and community programs related to sickle cell disease, as well as members of the patient community with leadership in programs related to sickle cell disease and government agencies that have oversight responsibility for health care delivery to individuals with genetic disorders. The Committee makes recommendations on research priorities conducted or supported by the Institute. The Committee also makes recommendations and develops long range plans of basic, clinical, applied, health education, and prevention related research concerning the scientific aspects of research programs on the nature, causes, diagnosis, treatment, and prevention of Sickle Cell Disease. NHLBI in turn provides feedback and updates its response to action items generated at each meeting.
How is membership balanced?*The Committee consists of 15 appointed members, five selected from authorities knowledgeable in clinical fields related to sickle cell disease, three members selected from experts in basic science fields related to sickle cell disease, three members selected from experts in translational science, and four public members selected with demonstrated leadership in programs related to sickle cell disease. The strength of the Committee is the diversity of its membership that represents disciplines from basic science to public health administration. It is further augmented by officials of Federal agencies involved in sickle cell services and related activities, e.g., Center for Disease Control and Prevention, and the Health Resources and Services Administration.
How frequent & relevant are cmte mtgs?*The Committee normally meets approximately two times per year. These meeting(s) include scientific presentations of ongoing or pending projects, program review of current and planned efforts, as well as open discussion regarding programmatic needs and direction. Members are asked to contribute expertise and specific efforts for future initiatives, conferences, and further advisory efforts that might prove helpful. The committee did not meet in FY 2020 due to the difficulty in reaching a quorum, due to the Covid-19 situation.
Why advice can't be obtained elsewhere?*This Committee, with professional and public members, is knowledgeable about sickle cell disease and biology relevant to sickle cell pathogenesis and serves as an effective mechanism for "bridging the gap" between the Federal programs and the community, and for providing advice to the National Sickle Cell Program. It provides an important focus for obtaining information from all Federal agencies that is not available through other mechanisms.
Why close or partially close meetings?N/A
Recommendation RemarksReports: This committee did not produce any public reports.

The DFO and Committee Decision Maker positions are held by the same individual based on assigned duties within the Institute.

No Federal salary costs are being reported because Federal and/or Ex Officio member(s) identified in the member section did not attend any meetings during the fiscal year.

Member(s): Dr. Allison King was reassigned to Chair for a 2 year term.

The SCDAC did not meet during the FY 2020 fiscal year, between October 1, 2019 and September 30, 2020, therefore no recommendations were made during this time. A meeting is planned for early 2021.
Hide Section - PERFORMANCE MEASURES

PERFORMANCE MEASURES

Outcome Improvement To Health Or Safety*YesAction Reorganize Priorities*No
Outcome Trust In GovernmentNoAction Reallocate ResourcesNo
Outcome Major Policy ChangesNoAction Issued New RegulationsNo
Outcome Advance In Scientific ResearchNoAction Proposed LegislationNo
Outcome Effective Grant MakingNoAction Approved Grants Or Other PaymentsNo
Outcome Improved Service DeliveryNoAction OtherNo
Outcome Increased Customer SatisfactionNoAction CommentN/A
Outcome Implement Laws/Reg RequirementsNoGrants Review*No
Outcome OtherNoNumber Of Grants Reviewed0
Outcome CommentN/ANumber Of Grants Recommended0
Cost Savings*NoneDollar Value Of Grants Recommended$0.00
Cost Savings CommentNIH supported basic and clinical research accomplishments often take many years to unfold into new diagnostic tests and new ways to treat and prevent diseases.Grants Review CommentN/A
Number Of Recommendations*45Access Contact Designated Fed. Officer*Yes
Number Of Recommendations CommentThere were no specific recommendations for FY 2020 (the committee did not meet).Access Agency WebsiteYes
% of Recs Fully Implemented*0.00%Access Committee WebsiteYes
% of Recs Fully Implemented CommentDue to the complexity of the recommendations made by this committee, staff is unable to determine which recommendations have been fully or partially implemented solely in response to this committee's activities.Access GSA FACA WebsiteYes
% of Recs Partially Implemented*0.00%Access PublicationsNo
% of Recs Partially Implemented CommentDue to the complexity of the recommendations made by this committee, staff is unable to determine which recommendations have been fully or partially implemented solely in response to this committee's activities.Access OtherNo
Agency Feedback*YesAccess CommentN/A
Agency Feedback Comment*At each meeting, the Executive Secretary provides status updates on previous recommendations made by the committee.Narrative Description*The goal of NIH research is to acquire new knowledge to help prevent, detect, diagnose, and treat disease and disability from the rarest genetic disorder to the common cold. The NIH mission is to uncover new knowledge that will lead to better health for everyone. NIH works toward that mission by the establishment of a Sickle Cell Disease Advisory Committee to provide advice and guidance concerning the Sickle Cell Disease Program, Division of Blood Diseases and Resources, National Heart, Lung, and Blood Institute.
Hide Section - COSTS

COSTS

Payments to Non-Federal Members*$0.00Est Payments to Non-Fed Members Next FY*$6,000.00
Payments to Federal Members*$0.00Est. Payments to Fed Members Next FY*$0.00
Payments to Federal Staff*$76,734.00Estimated Payments to Federal Staff*$78,729.00
Payments to Consultants*$0.00Est. Payments to Consultants Next FY*$0.00
Travel Reimb. For Non-Federal Members*$0.00Est Travel Reimb Non-Fed Members nextFY*$18,700.00
Travel Reimb. For Federal Members*$0.00Est Travel Reimb For Fed Members*$0.00
Travel Reimb. For Federal Staff*$0.00Est. Travel Reimb to Fed Staff Next FY*$0.00
Travel Reimb. For Consultants*$0.00Est Travel Reimb to Consultants Next FY*$0.00
Other Costs$0.00Est. Other Costs Next FY*$500.00
Total Costs$76,734.00Est. Total Next FY*$103,929.00
Federal Staff Support (FTE)*0.40Est. Fed Staff Support Next FY*0.40
Cost RemarksDue to the Covid-19 pandemic there were no meetings held. The only staff costs for this FY are staff related. The increase in operating costs in FY20 is due to additional staff working on SCDAC nominations and future meetings.

No Federal salary costs are being reported because Federal and/or Ex Officio member(s) identified in the member section did not attend any meetings during the fiscal year.
Est Cost RemarksProjected costs for FY21 are for in-person meetings and are subject to change.

No Federal salary costs are being reported because Federal and/or Ex Officio member(s) identified in the member section did not attend any meetings during the fiscal year.
Hide Section - Interest Areas

Interest Areas

Category
Area
Health
Health Care
Public Health
Medicine
Health and Health Research
Hide Section - MEMBERS,MEETINGS AND ADVISORY REPORTS

MEMBERS,MEETINGS AND ADVISORY REPORTS

To View all the members, meetings and advisory reports for this committee please click here
Hide Section - CHARTERS AND RELATED DOCS

CHARTERS AND RELATED DOCS

No Documents Found
Hide Section - DATA FROM PREVIOUS YEARS

DATA FROM PREVIOUS YEARS

Committee

Data from Previous Years

 
ActionCommittee System IDCommittee NameFiscal Year
 COM-036422Sickle Cell Disease Advisory Committee2019
 COM-034628Sickle Cell Disease Advisory Committee2018
 COM-001663Sickle Cell Disease Advisory Committee2017
 COM-002564Sickle Cell Disease Advisory Committee2016
 COM-004045Sickle Cell Disease Advisory Committee2015
 COM-004518Sickle Cell Disease Advisory Committee2014
 COM-005890Sickle Cell Disease Advisory Committee2013
 COM-006597Sickle Cell Disease Advisory Committee2012
 COM-008060Sickle Cell Disease Advisory Committee2011
 COM-009090Sickle Cell Disease Advisory Committee2010
 COM-010300Sickle Cell Disease Advisory Committee2009
 COM-011031Sickle Cell Disease Advisory Committee2008
 COM-011920Sickle Cell Disease Advisory Committee2007
 COM-012530Sickle Cell Disease Advisory Committee2006
 COM-014125Sickle Cell Disease Advisory Committee2005
 COM-014768Sickle Cell Disease Advisory Committee2004
 COM-016010Sickle Cell Disease Advisory Committee2003
 COM-016474Sickle Cell Disease Advisory Committee2002
 COM-017840Sickle Cell Disease Advisory Committee2001
 COM-018737Sickle Cell Disease Advisory Committee2000
 COM-019775Sickle Cell Disease Advisory Committee1999
 COM-020391Sickle Cell Disease Advisory Committee1998
 COM-021513Sickle Cell Disease Advisory Committee1997