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
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
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
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
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
| || |