Our Leadership

Our Leadership

The management of the Huntington Study Group is conducted by HSG, a Type B not-for-profit corporation incorporated under the laws of the State of New York in 2013. HSG is governed by the Board of Directors (“Board”) in accordance with the HSG Charter.

HSG Board

The Board shall be comprised of the officers in accordance with HSG’s Bylaws. The Chair and the Co-Chair of HSG shall also serve as the Chair and Co-Chair of the Executive Committee. The Chair and Co-Chair of the Executive Committee shall be elected by a majority vote by HSG members. The Chair and Co-Chair shall also appoint a Treasurer and Secretary to serve as members of the Executive Committee.

View Current HSG Board Member Profiles

HSG Executive Committee

The purpose of the Executive Committee is to advise the Board on matters affecting HSG and to assist the Board in transacting certain business activities of HSG, as determined by the Board. The Executive Committee’s approval may be needed prior to obtaining final Board decision. The Executive Committee shall serve as a ready source of advice and guidance to the Executive Director on executive decisions.

The Executive Committee shall consist of the following members: 1) a Chair, Co-Chair, two investigator members, and one coordinator member who are elected by the voting members; 2) three external members who are appointed by the Chair who can represent the perspectives of the following stakeholders: a) the HD community, b) global researchers, and c) study sponsors; 3) a representative of the HSG Biostatistics Center and the HSG Coordination Center, appointed by the Chair; and 4) the Treasurer and Secretary of HSG.

View Current Executive Committee Member Profiles

HSG Standing Committees

Activities of HSG are guided by HSG Standing Committees. Members of Standing Committees are selected by HSG leadership to widely represent our constituents and stakeholders. All Committee members serve rotational terms.

The Research Advisory Board will be responsible for reviewing, before their implementation, all proposed HSG research studies, or substantial changes to the specific aims of ongoing research studies, including reviewing study protocols and informed consent forms. The Research Advisory Board will also review data mining proposals for databases where there is no longer a steering committee overseeing the database. The Research Advisory Board will promptly review and make recommendations advising the Executive Committee and the Board and proposers, including the PI and co-PI of the research study, about the scientific merits and ethical basis of the proposed research. The Clinical Research Advisory Committee shall develop and implement a uniform set of standards which shall be used in evaluating proposed HSG research studies.

The Credentials Committee will be responsible for reviewing and evaluating the merits of applications received from individuals who are interested in participating in HSG studies. The Credentials Committee shall develop and implement a uniform set of standards which shall be used in evaluating applicants; including, but not limited to: the applicant’s education and training, clinical and research experience, letters of reference, number and types of HD patients and families currently followed, and other factors as determined by the Committee.

The Education Committees will be responsible for developing and implementing HSG educational and training programs with the stated goal of advancing the knowledge and capabilities of HSG members with regard to the design, planning, conduct and implementation of HD clinical research trials. The current Education Committees include: Member Education, Provider Education, Family Education, Annual Meeting Education

The Nominating Committee shall be responsible for nominations and elections as set forth in the HSG Charter. Members of the Nominating Committee are ineligible for nomination as an officer, award recipient, or member of the HSG Executive Committee during their term of committee service.

The Publications Committee will be responsible for review of all publications of HSG studies prior to publication, an annual review of HSG publication policies and for making recommendations, if any, to the Executive Committee for additions or revisions to these policies. All additions or revisions to these policies shall be reviewed and finalized by the Board. The Committee will also assist the Executive Committee, as necessary, in the adjudication of problems or conflicts arising out of implementation of the HSG publication policy.

The Standards Committee shall be responsible for maintaining professional standards and periodic review of conflict-of-interest policies and guidelines and the HSG Charter of HSG, as set forth herein, and for making recommendations, if any, to the Executive Committee for additions or revisions of these policies. The Standards Committee will also assist the Executive Committee in the oversight and adjudication, as necessary, of problems or conflicts arising in the maintenance of professional standards and the implementation of these guidelines. The Standards Committee will establish mechanisms of due diligence and due process in considering and making recommendations to the Executive Committee for disciplining or expelling a voting or associate member of HSG. At the request of the Executive Committee, the Standards Committee may be asked to investigate and recommend action upon charges or allegations of scientific or professional misconduct, including issues or incidents of conflict-of-interest, relevant to participation in HSG studies.