WFN Research Group on Motor Neuron Diseases
Constitution

Contents

1. Name and Objectives
2. Organization
3. Finances
4. Research Group Office
5. Membership of the Research Group
6. Governance
7. Annual General Meeting
8. Nominations and Elections
9. Standing Committees

A: Name and Objectives

1. The World Federation of Neurology Research Group on Motor Neuron Diseases was established by the World Federation of Neurology in 1998, following representations from the Federation of ALS ClinicalTrials Consortia, itself an ad hoc group set up by the World Federation of Neurology sub-committee on Motor Neuron Diseases. At the time the latter was a sub-committee of the WFN Research Group on Neuromuscular Diseases. The Federation of ALS Clinical Trials Consortia was founded in 1995 at a research planning meeting in Talloires, France and developed subsequently by an ad hoc group set up for the purpose.

   The WFN Research Group on Motor Neuron Diseases ("Research Group") has the following objectives:

   • to advance knowledge concerning ALS, including fostering research, coordinating researchers' activities, and the education and training of clinicians and scientists concerning the problem of ALS and other motor neuron diseases throughout the world, in accordance with the charter of the World Federation of Neurology
   • to facilitate properly designed clinical trials of putative therapeutic agents in ALS through the Federation of ALS Clinical Trials Consortia
   • to involve appropriate Centers and Consortia of investigators in ALS clinical trials, but not to regulate access
   • to facilitate collaboration in all aspects of research, including the design, execution and analysis of clinical trials.

2. The Research Group is committed to open and full scientific communication, to peer review, to full disclosure of potential or perceived conflicts of interest, and to democratic governance in all its activities.

3. The Research Group will develop the principles of trial design and conduct based on the Airlie House Guidelines for ALS CLinical Trials (J Neurol Sci 1995: 129;1-10; and www://www.wfnals.org).

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B: Organization

1. The Research Group is a non-profit organization, comprising a group of clinical investigators who conduct research at the institutions with which they are affiliated, and with various Consortia of ALS clinical triallists. The views of the Research Group do not necessarily represent the views of the organizations with which these investigators are affiliated. The Research Group is statutorily subordinate to the World Federation of Neurology in all organisational matters, and its legal and financial responsibilities.

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C: Finances

1. All income and property of the Research Committee shall be applied solely to the promotion of the objectives described in A-1. Reasonable and proper expenses necessary to the realisation of these objectives shall be paid as necessary to members of the Research Group. These shall be properly accounted and presented to the membership of the Federation at least once annually at the Annual General Meeting of the Research Group. All accounts shall be kept at the Research Group's designated Office (see D-1). Annual audited accounts shall be made available to the World Federation of Neurology as required by that organisation.

2. The Treasurer and Chairman shall be responsible, through the Executive Committee, for the financial affairs and conduct of the Research Group, including the financial control of research undertaken by the Research Group.

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D: Research Group Office

1. The Executive office shall be located at the Institution of the Chairman of the Research Group. There shall be a discrete, designated account, free of administrative and other overhead charges, maintained by the Chairman and/or the Treasurer of the Research Group, to manage its financial affairs.

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E: Membership of the Research Group

1. Voting membership of the Research Group shall be open to any clinician or scientist with a genuine interest in ALS clinical trials. The Executive Committee reserves the duty of terminating an individual's membership of the Research Group in the event of failure to adhere to the principles of the Research Group, on the advice of the Membership Committee (see para 5(g)).

2. Non-voting members, representing Industry, Commerce, Finance or patient organizations, shall be eligible for membership of the Research Group. Non-voting members will be actively involved in research organised, co-organised or arranged in collaboration by or with the Research Group.

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F: Governance

1. The Research Group shall be guided by an Executive Committee, consisting of not more than a total of fifteen members. The members of the Executive Committee shall serve three year terms, renewable once. A member may serve again on the Committee only after an interval of three years. The Chairman, and Treasurer of the Research Group, and the Chairman of the WFN Sub-Committee on ALS itself, of which the Research Group is a sub-committee, shall be full members of the Executive Committee. There are thus twelve other members of the Executive Committee, taken from the membership of the Research Group. In addition, there will be one additional, non-voting member, appointed from the International Alliance of ALS/MND Associations, representing patients' interests. No more than five of the twelve elected members of the Executive Committee may be working at centres in any one country.

   One member of the Executive Committee shall be designated the Honorary Secretary, and shall take minutes, as necessary, of minutes of the Executive Committee and of the Annual General Meeting, in the absence of any other secretarial help that may be organised by the Executive Committee.

   A quorum for meetings of this committee shall be constituted by the presence of eight members, including the Chairman.

2. In considering candidates for membership of the Executive Committee the constitutional requirements of the WFN, especially with regard to representation from different Research and Clinical Trials Consortia, different continents and different-sized groups, shall be heeded. However, this requirement shall be considered in relation to the over-riding need for the Executive Committee to consist of clinician/scientists with a proven reputation and expertise in ALS research, and in the design and conduct of clinical trials in the disease. Thus, members of the Executive Committee must be recognised as suitably qualified by their experience and expertise to fulfill this role.

3. All matters considered by the Executive Committee shall, when necessary, be brought to a vote of members present, requiring a simple majority to be considered carried, except in the case of disciplinary matters (see para 5(g)).

4. In exceptional circumstances one additional member may be coopted, ex officio and without voting rights, to the Committee for a period of one year only. Cooption shall not be renewable.

5. The Executive Committee shall be responsible for:

   1. developing and supporting the scientific projects of the Research Group through the constituent Consortia and through individual members.
   2. reviewing and approving the design of research protocols organised under its aegis or with its financial support, including the establishment of any steering and publication committees, and the appointment of principal and regional investigators with managerial responsibility for multi-center studies.
   3. reviewing and appointing such standing committees of the Research Group as shall be formed
   4. formulating and maintaining appropriate standards for the Research Group regarding the conduct and publication of research carried out by the Research Group.
   5. formulating and maintaining current and accurate listings of active members of the Research Group, and of associated organisations, eg industrial collaborators.
   6. proposing and collecting any dues, fees or charges due to the Research Group. The Executive Committee shall meet at least twice each year, and shall report to the membership through its chairman at each annual general meeting. These biannual meetings shall, as far as possible, be held on the occasion of other major national or international meetings as appropriate.
   7. disciplinary matters. The Executive Committee may exercise the right of expulsion of any member of the Research Group deemed to have acted in such a way as to bring the Research Group into disrepute. In exercising this function, the Executive Committee will be mindful of the constitution of the Research Group within the World Research Group of Neurology, whose reputation and interests must also be protected. Such disciplinary matters will be discussed in confidence, and the minutes kept in a locked cabinet by the Chair. A majority of two-thirds of the members of the Executive Committee present shall be deemed sufficient to carry the motion.
   8. Standing orders. These shall be agreed by the Executive Committee at the first of any series of meetings held in each year, after the Annual General Meeting.

6. The Chair and Treasurer shall serve for 3 years each. The Chair shall be eligible for re-election for one further term. The Treasurer shall be re-elected for as many subsequent terms as appropriate. In the event of illness, or other absence of the Chair, the Treasurer shall have the duty of convening a meeting of the Executive Committee with the purpose of electing one of these to act as Chair. If necessary the Executive Committee shall then commence the process of election of a new Chair (see section H2).

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G: Annual General Meeting

1. The annual General Meeting shall be held at a suitable time once each calendar year; a quorum for the transaction of business shall consist of at least 15% of the active members of the Research Group. Electronic means may be used for relevant communication prior to the meeting.

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H: Nominations and Elections

1. Elections for Chair, for Treasurer and for membership of the Executive Committee shall be organised by the Executive Committee. The Chair and Treasurer may not be affiliated with the same institution. Each year the Executive Committee shall arrange for four new members to be elected, to replace those who have completed their terms of office.

2. Six months before election time, a slate of candidates for vacancies among the officers and members of the Executive Committee shall be recommended for election among voting members. This slate of candidates shall be prepared by the Membership Committee.

   The slate of names shall be sent by post, fax or email to all members of the Research Group, each of whom shall have the right to nominate other candidates to the Chair of the Nominating Committee. The Chair of the Nominating Committee shall close the list of candidates 6 weeks after sending out the slate of names recommended by the Nominating Committee. Candidates suggested by members, other than by the Nominating Committee, shall require five supporters in order to be declared a candidate. A final list of candidates for voting shall be sent to each member of the Research Group by post, fax or email. The ballot shall consist of a secret ballot. Votes must be received within 4 weeks of mailing to be considered eligible.

3. Each election shall be organized by the Executive Committee, or by its delegated members.

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I: Standing Committees

1. The Executive Committee of the Research Group shall establish standing committees to consider:

   1. Publications: this committee will be responsible for overseeing publication policies of the Research Group, and will adjudicate in any problems that may arise with respect from any publication promoted or arising from the activities of the Research Group. It shall consist of the Chair of the Executive Committee, and of four other members, appointed by the Executive Committee. These members will serve for three years. The function of this committee is related to publications arising from the activities of the Research Group as a whole. It is not the purpose of this committee to evaluate publications arising from the activities of the individuals or ALS Clinical Trials Consortia that form the Research Group, but it may offer assistance in resolving academic or professional problems by providing advice when consulted.
   2. Scientific matters: this committee will consider all matters related to scientific issues arising from planned or extant research, including clinical trial design, conduct and analysis, carried out by the Research Group, with its cooperation, or in its name. This Committee will consist of a Chair and of four other members, all appointed by the Executive Committee. These members will serve for three years.
   3. Membership: the Membership Committee shall be responsible for all matters arising in relation to membership of the Research Group, including the selection of suggested candidates for election to the Executive Committee, and the selection of candidates for office of Chairman and Treasurer. Members of the Membership Committee will be appointed by the Executive Committee, and shall serve non-renewable terms of three years each. The Chairman and Treasurer shall not be eligible to serve on the Membership Committee.
   4. Fund raising: this committee will be charged with all fund-raising activities necessary for the pursuance of the aims and objectives of the Research Group, recruiting membership from within the Research Group, and from outside the Research Group as necessary. Members recruited outside the Research Group will require the agreement of the Executive Committee, which may be sought by electronic comunication. Membership will be reviewed after three years, but may be renewed.
   5. External relations: this function is essential to the furtherance of the aims of the Research Group, including advertising, media contacts, and fund-raising. Membership of this committee may frequently necessitate help from outside the Research Group. This must be agreed by the Executive Committee, by electronic means, if necessary. Membership will be reviewed after three years.
   6. Education and ethics: this committee will be concerned with ethical and educational matters that may arise from the Executive Committee, or from any member of the Research Group. It will consist of five members appointed by the Executive Committee.
   7. Other standing committees may be established as necessary. In each, membership should be limited to three years. They may be concerned, for example, with financial matters, should the Executive Committee wish to delegate aspects of this work, with planning clinical trials, with legal questions, with patient liasion activities and policies, and with quality control of data acquisition and handling in clinical trials.

2. Chairs and members of standing committees should not usually serve consecutive terms on one committee although they may serve on other committees. They may serve on more than one committee, provided there is no conflict of interest in so doing.

3. All committees shall be responsible for keeping accurate minutes, and for reporting a summary of their activities to the Executive Committee, at least on an annual basis, before the Annual general meeting. They shall also be responsible for their for their financial stringency. All financial matters shall be reported at least annually to the Treasurer, and from time to time to the Treasurer on request as he deems fit. The Treasurer shall be empowered to make such funds available to the committees as are necessary, after consultation with the Executive Committee and Chair as agreed by the latter committee in its own standing orders.

M. Swash
London. December 1995
revised April, and November 1996, and October 1998

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