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Constitution and Bylaws

ARTICLE I - NAME AND MISSION

This organization shall be known as the Ataxia Study Group (ASG), representing a consortium of scientific investigators from academic and research centers who are committed to the cooperative planning, implementation, and performance of clinical trials and other research studies in ataxia disorders. Studies will not be focussed on one particular ataxia disorder or one group of disorders, but rather cover the whole spectrum of ataxia disorders. Clinical studies may include interventional trials, observational studies and studies that aim to elucidate the causes of ataxia.
One important goal of the ASG will be to maintain an infrastructure that supports clinical and scientific studies in ataxia including but not limited to patient registries and banks of biomaterials. The ASG will adopt rules that regulate the access and usage of the information and materials provided by this infrastructure.
The ASG is committed to the principles of open and full scientific communication, peer review, full and open disclosure of potential conflicts-of-interest, and democratic governance of its organization and activities. The ASG is also interested in educating professionals and the public by providing scientific and medical information about Ataxia disorders. The ASG will work with other professional and family organizations and with government and industry sponsors to develop substantive treatments for patients and families affected by Ataxia disorders.

ARTICLE II - ORGANIZATION

The ASG, founded in 2008, is organized as an independent, nonprofit consortium of scientific investigators.

ARTICLE III - INCOME AND EXPENSES

Any income or property of the ASG shall be applied solely towards the promotion of the objectives of the ASG as set forth in Article I, and no portion shall be paid or transferred to any officer, member or employee of the ASG, except for reasonable and proper remuneration including repayment of out-of-pocket expenses in return for any services rendered to the ASG. True and auditable accounting shall be kept of the sums of money received and expended by the ASG and presented to the ASG membership at least annually.

ARTICLE IV - MEMBERSHIP

Investigators are eligible for membership, (1) if they are experienced in management of ataxia patients and/or have performed or participated in clinical studies of ataxia patients, or (2) if they have made other important contributions to the field of ataxia research. Decisions on membership and on exclusion of members are taken by the Executive Committee. Members will convene for an annual meeting to be organised by the Executive Committee.
Each member will have non transferable personal voting rights for those matters in which they are directly involved.

ARTICLE V – EXECUTIVE COMMITTEE

The ASG is governed by a 7-member Executive Committee. The Executive Committee will elect a Chair and Treasurer among its members.
The ASG Executive Committee is responsible for developing and supporting the scientific projects of the ASG, decisions on membership, and organisation of the annual meetings. The Executive Committee may propose annual dues for ASG members in order to support ASG activities, including but not limited to the planning and implementation of studies, scientific and educational symposia, and its annual meeting.

ARTICLE VI - NOMINATIONS AND ELECTIONS

Elections for the Executive Committee shall take place every 4 years by mail ballot, with the majority of total votes received from members required for election. The only exception in term of time will be the first term that will last 2 years.
Within 1 month prior to each election, all members of the ASG will be invited to nominate themselves as candidates for election and to make their nomination known to the ASG. The chair of the Executive Committee shall open and close the nomination period. The nomination period will last 30 days.
The Chair of the Executive Committee of the ASG will then mail the election ballot to all members of the ASG. Votes, which shall be by secret ballot, must be received by the Chair within 30 days after mailing out the official ballot in order to be counted. Each member will have a maximum of 7 votes. Accumulation of votes will not be allowed.

ARTICLE VII - ASG STUDIES

Any member of the ASG may make application to the Executive Committee for authorization of an ASG study by submitting a sufficiently detailed summary and outline of the proposed protocol. In its decision as to whether or not to authorize a study, the Executive Committee shall comment on the aims, objectives, scientific and clinical adequacy of the protocol, qualifications and capabilities of the investigators, mechanism for funding, and sponsorship for the proposed study.

ARTICLE VIII - ASG PUBLICATION POLICIES

The authorship and acknowledgements of various types of articles should be formulated in accordance with the following guidelines:
1. For each publication of an ASG study the publication policy shall be discussed and agreed upon in advance.
2. Publication of ASG research data need to acknowledge the ASG.
3. All articles utilizing data on patients recruited as part of a study must acknowledge support from the study sponsor(s), unless advised by the sponsor that an acknowledgement is not necessary.

ARTICLE IX - ETHICAL AND CONFLICT-OF-INTEREST GUIDELINES

Members of the ASG should maintain the highest personal and professional standards in conducting clinical trials and research. Real and perceived conflict-of-interest must be avoided. To these ends, we agree that:
1. ASG members shall not in any way or manner benefit financially from the information obtained as a result of their participation or knowledge of ASG studies. In particular, ASG members agree not to own or trade in the equity of a company whose drugs or products are being investigated by the ASG (“involved company”). ASG members further agree not to inform or influence relatives, friends or others in financial transactions regarding the “involved company”.
2. ASG members have an obligation to act in the public interest and should be willing to educate the scientific and lay communities. ASG members agree that such practices are permitted provided there is no disclosure of confidential information or any potential for jeopardizing the successful outcome of any study which is in progress.
3. Intellectual property rights in regard to study applications will be granted to ASG members who apply for an authorisation of an ASG study to the Executive Committee.

ARTICLE X - ANNUAL ASG MEETING

The Executive Committee will organize an annual meeting of the ASG.

ARTICLE XI - SCIENTIFIC SYMPOSIA

The ASG shall help sponsor and organize scientific and educational programs as directed by the Executive Committee.

ARTICLE XII – DUES

The Executive Committee may propose annual dues for ASG members, including but not limited to the planning and implementation of ASG studies, scientific and educational symposia, and its annual meeting. Proposals of the Executive Committee for dues will require approval by a majority of votes received from ASG members who respond.

ARTICLE XII - DATE OF ACTIVATION OF CONSTITUTION AND INTERIM OFFICERS
 
When approved by at least two-thirds of the votes cast by members who are present, these Constitution and Bylaws will become active and adopted on the foundation meeting of the ASG.

ARTICLE XIV - AMENDMENTS

Amendments to the Constitution and Bylaws may be proposed by any member, must be made in writing, must be signed by 6 other members, and must be submitted to the Chair of ASG Executive Committee at least 1 month prior to a meeting of the ASG Executive Committee, at which time the proposed amendment will be considered and voted upon. If the proposed amendment is approved by a majority of the Executive Committee, it will be circulated to all ASG members for a mail ballot. Affirmation by at least two-thirds of votes received by the Chair, within one month after the proposed amendment was circulated, shall be required for the amendment to be adopted.
At the request of the proposer, amendments not approved by the Executive Committee may be placed on the agenda at least one month prior to an annual ASG meeting where the proposal may be enacted by an affirmative vote by at least three-quarters of votes cast by members at the meeting.

ARTICLE XV - DISSOLUTION OF THE ASG

The dissolution of the ASG shall be decided by an affirmative vote by written ballot of three-fourths of votes of members of the ASG who respond.