International Pediatric MS Study Group

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International Pediatric MS Study Group
Charter/By-laws
May 2007
 This charter is subject to revision.

Introduction

This document defines the structure, governance, activities and conduct of the International Pediatric Multiple Sclerosis Study Group (Study Group).

Unifying Vision of the Study Group:
To optimize worldwide care, education and research in pediatric multiple sclerosis (MS) and other acquired inflammatory demyelinating disorders of the central nervous system (CNS).  

Guiding Principles of the Study Group:
The fundamental goal of the International Pediatric MS Study Group is to foster opportunities for collaboration to enhance our understanding of the care of children and adolescents (prior to the 18th birthday) with pediatric MS and related disorders, and to maximize international participation in activities of the group.

The fundamental belief of the International Pediatric MS Study group is that enhanced worldwide collaboration in educational, research and outreach activities will improve the quality of care, increase the quality and pace of research, and increase awareness and understanding of pediatric MS and related disorders.  It is the belief that investigation into pediatric MS and related disorders will improve our understanding of MS in general.

 
In the spirit of collaboration, the International pediatric MS Study group provides a forum, and encourages its members to communicate information about their initiatives.   Where such initiatives are developed due to the contacts gained by membership in the Study Group, reference should be made to this facilitating role of the group in publication of research outcomes.

The official language of the Study Group is English.

Decision making process: 
The process by which decisions are made by the Secretariat, Steering Committee and program committees is based on a consensus model.  A simple majority determines election of Steering Committee members.  A simple majority determines approval of policies of the Study Group, but a revision of established policies requires 2/3 majority of the voting membership.

Guiding principles for collaboration by the Study Group:

  • Questions must be of relevance to pediatric MS and related disorders
  • Projects initiated by the Study Group will be global in scope
  • Full proposals must have scientific, clinical or educational merit
  • All qualified individuals or groups from the global membership may participate in a project of the Study Group 
Members of the Study Group are expected to submit proposals for global cooperative projects to the Study Group.  Likewise, members of the Study Group are encouraged, where appropriate, to develop multinational projects in such a way that they can be submitted to the Study Group.  Apart from activities initiated under auspices of the Study Group, other collaborative activities might include: 
  • Multinational (not global) projects undertaken by several members, on their own initiative and not under the auspices of the Study Group. Group members are encouraged to share information of such projects and their outcomes with the wider group.   When initiatives are developed due to the contacts gained by membership in the Study Group, reference should be made to this facilitating role of the group in publication of research outcomes.
  • Requests for members of the Study Group to join multinational initiatives undertaken by one or more members under their own auspices, or use of the Study Group's communication or networking capabilities for such initiatives. Such requests should be submitted through a letter of intent (described below).   In such cases reference should be made to the Study Group’s facilitating role in publication of research outcomes.
The process for initiating Study Group collaborative projects:
  • A scientist/clinician approaches the Steering Committee with a letter of intent that requests the Study Group’s endorsement and participation in a project.  Letters of intent can include requests:
    • For a project initiated by the Study Group
    • By a member of the Study Group or external party who proposes a project (i.e. the Study group is a full participant in the organization of the study, the scientific design, etc.)
    • By a member of the Study Group or an external party with a well defined project, but who wants an endorsement of the Study Group, advice, or who wishes to invite parties from the Study Group. 
    • By a member of the Study Group or an external party interested in initiating a study and requesting use of archived data collected for a previous Study Group initiated project. In this case the data may only be used for the specific project.  In such cases the steering committee will contact, if available, the corresponding author or other senior participant from the original project from which the data was arrived for comments on the letter of intent.
  • A standardized format for letters of intent will be utilized.
  • If endorsed, the appropriate operational committee reviews a full project proposal, and if favorably reviewed, the project is presented to the Steering Committee for a vote.  This will ensure that there is synergy rather than conflict with other priorities or projects of the Study Group.
  • The project is announced to global membership.
  • Prior to the initiation of a Study Group project, decisions about authorship, grant and manuscript writing, statistical analysis, (i.e.: clarity on leaders) are established and agreed to by the Steering Committee.
  • The established project leads hear from interested members and seek funding in collaboration with the Secretariat and other stakeholders.
(See appendix B for authorship policies)

Guiding principles of data collection for Study Group initiated projects:

·      The group will own pooled data collected for a Study Group initiated project. Data should be collected as determined by the question being asked.  Contributors of data will have access to the pooled data as it relates to the specific project.  Subsequent use of pooled data for a different project would require submission of new letter of intent.     
·        Investigators retain the ownership and scientific use of their own data contributed to a Study group initiated project.

·        Housing and management of data collected for Study Group initiated projects will be the responsibility of the Secretariat.
N.B.: For the purposes of this document, a year is deemed to begin January 1st.



Secretariat

Composition: 
Up to two representatives from each contributing MSIF member Society.  Other professional associations may be invited to join at the discretion of the Secretariat.
Annually, the representatives will elect a chair to act as the primary point of contact for the chair of the Steering Committee.  

 Duties/responsibilities:
  • Financial sustainability of Study Group:  The Secretariat solicits funding to ensure the sustainability of the Study Group. 
  • Oversight:  The overarching role of the Secretariat is to ensure that resources contributed to the Study Group are effectively used, evaluated and properly managed, and that the activities of the Study Group are in accordance with its guiding principles.  Reports from the Steering and program committees are made to the Secretariat. Ongoing communication with the chair of the Steering Committee is required.  The Secretariat can veto a decision or recommendation made by the Steering Committee or voting membership if it contravenes the principles of the Study Group as outlined in the charter. 
  • Administrative Support:  Secretariat appointed staff representative(s) will provide the administrative support required by the Study Group:  e.g. nominations & elections, notices to members, other communication to funding agencies, and information technology support. Staff representatives report to local supervisors. The Secretariat will interact with local supervisors as needed.  The Secretariat will develop communication vehicles for internal communication with the Study Group.
  • The Secretariat seeks to build collaborative relationships with other interested parties.
  • Relationships with pharmaceutical companies:  The Secretariat will liaise with pharmaceutical companies on behalf of the Study Group.
Global membership:
The network of members is global in nature, ideally including a mix of adult and pediatric neurologists, basic scientists, other clinicians, representatives of MS Societies, and other professional organizations.  Annually the general members will be surveyed for voting member nominations (defined below).  Additionally they will have the opportunity to express their interest in participation on one or more committees or projects.
 
Meetings: 
The general membership does not have a scheduled annual meeting, but will be convened subject to objectives and funding.  A goal is to hold a working meeting for the general membership every two years.

Voting Members: 
Voting members include members of the Steering Committee and members of the operational committees and Nominating Committee, defined below).  At least 15 countries must be represented in the voting membership.  No committee may have more than one member from the same affiliated institution. While a person may sit on up to two operational committees, and therefore hold two “voting” positions, s/he only receives a single vote. 

Steering Committee

Accountability: 
  • To Secretariat: the Steering Committee is accountable to the Secretariat. Ongoing communication between the chair of the Steering Committee and the Secretariat is required.
  • To the global membership:  The Steering Committee must have a process to seek input from voting and general members and to communicate back on decisions and activities of the Steering Committee.
Composition: 
The Steering Committee includes nine positions elected by the voting members: chairs of the four operational committees; three members at large; the past chair and the current chair.  Ideally it involves representatives from different countries, wherever possible.  Only someone serving on the Steering Committee at the time of nomination can fill the position of chair.  The past chair serves as the chair of the Nominating Committee.   The chair has the authority to fill vacancies in the Steering Committee, until the next election.

Term: 
Members of the Steering Committee are elected by the voting members (see above) to serve a three-year term.  Six consecutive years is the maximum term for any one person to sit on the Steering Committee in any capacity, with the exception of the past-chair.  After having rotated off for at least a year, a person is again eligible for election.  The founding Steering Committee will establish a staggered rotation system to help ensure continuity and turnover of committee membership.

Nomination & Election:
  • The past chair of the Steering Committee chairs the Nominating Committee.
  • Nominations will be solicited annually from the global membership prior to October 1.  A valid nomination must include the nominee’s CV and an indication that the nominee is willing to serve if elected.
  • An election for the Steering Committee will be conducted by ballot.  It will be distributed in October to all voting members, to be returned by November 30 to the Secretariat.
Meetings: 
The Steering Committee must meet face-to-face annually.  Business will be conducted throughout the year using other technology.  Quorum for holding any official meeting requires at least six of the nine members.  In the event of a tie, the chair has the deciding vote. Minutes are required of all meetings.

Duties and Responsibilities: 
The Steering Committee provides leadership and direction for the Study Group.  It will:
  • Set the Study Group agenda and outcomes
  • Develop, review and amend Study Group policies
  • Approve and endorse (as appropriate) the recommendations of the operational committees and the Nominating Committee, including ratification of committee members
  • Guide collaborative activities of the Study Group
  • Appoint task forces as needed
  • Report to the funding agencies annually, including activities, accomplishments, outcomes and future plans
Removal from committee: 
Committee members may be removed from their position by the decision of the External Advisory Group.  Matters that would be referred to the External Advisory Group for their review would include (but not be limited to):  professional misconduct, misrepresenting the Study Group, failure to disclose conflict of interest, use of position to obtain monetary benefits for self, family members or close associates.

Nominating Committee

Accountability:  The Nominating Committee is accountable to the Steering Committee. Ongoing communication between the chair of the Steering Committee and the chair of the Nominating Committee is required.  

Composition:  The Nominating Committee will include five members, representing a minimum of four countries. The past-chair of the Steering Committee is the chair of the Nominating Committee. 

Term:  Members of the Nominating Committee are appointed by the Steering Committee to serve up to a three-year term.  After having rotated off for at least a year, a person is eligible for reappointment. A staggered rotation system will be established.  

Meetings:  The Nominating Committee will meet by telephone at the discretion of the chair. There must be at least one committee meeting annually. Quorum for holding any official meeting requires 2/3 of the committee members. 
 
Duties and Responsibilities: 
  • Annually solicit input from the global membership through a survey process administered by the Secretariat.
  • Identify, qualify, prepare and recommend to the Steering Committee, a slate of nominees for the membership of: the Steering Committee, the Nominating Committee and operational committees.
  • Accordingly, the Nominating Committee reviews all prospective and current committee members with a view to creating balance among gender, age, and geography.
  • Notify all current committee members who will be re-nominated; call and thank committee members whose terms are ending
Removal from committee: 
Committee members may be removed from their position by the decision of the External Advisory Group.  Matters that would be referred to the External Advisory Group for their review would include (but not be limited to):  professional misconduct, misrepresenting the Study Group, failure to disclose conflict of interest, use of position to obtain monetary benefits for self, family members or close associates.

Operational Committees 
There are four operational committees of the Study Group:  
  • Clinical
  • Outreach, Education & Advocacy
  • Publications and Presentations
  • Research
Accountability: 
The operational committees are accountable to the Steering Committee. Ongoing communication between the chair of the Steering Committee and the chair of each operational committee is required.  Recommendations brought to the Steering Committee from any operational committee must have approval from 2/3 of the operational committee members.

Composition: 
Operational committees will include a minimum of five members and a maximum of 10, and more as determined by the specific committee chair.  The chair of each operational committee recommends nominees for approval by the Nominating Committee annually.  Ideally it involves representatives from different countries.   Individuals can participate in up to two operational committees simultaneously.

Term:  Members of the operational committees are appointed by the Steering Committee to serve a three-year term, renewable once.  After having rotated off for at least a year, a person is again eligible for appointment. A staggered rotation system will be established to help ensure continuity and turnover of committee membership.
 
Meetings:  Operational Committees will meet by teleconference or in person (if funding permits) at the discretion of the chair. There must be at least one committee meeting annually. Business will be conducted throughout the year and using other technology.  Quorum for holding any official meeting requires 2/3 of the committee members. Minutes are required of all committee meetings. 
 
Duties and Responsibilities (all operational committees): 
  • Liaise and invite input from the global membership on projects relevant to specific committees
  • Direct processes and procedures for committee-specific activities and functions specified below
  • Report to the Steering Committee annually on progress, accomplishments, outcomes and future plans
  • Conduct all committee activities in compliance with the Study Group’s principles
Removal from committee: 
Committee members may be removed from their position by the decision of the External Advisory Group.  Matters that would be referred to the External Advisory Group for their review would include (but not be limited to):  professional misconduct, misrepresenting the Study Group, failure to disclose conflict of interest, use of position to obtain monetary benefits for self, family members or close associates.

Committee Specific Duties

Clinical:  To facilitate studies aimed at optimization of care for children with MS and related disorders
 
Outreach, Education and Advocacy:  to facilitate development of initiatives and resources to achieve greater awareness of pediatric MS and related disorders, and advocate for improved care of individuals with MS and related disorders worldwide.
 
Research: to facilitate research studies in pediatric MS and related disorders directed at understanding the pathobiology of the disease
 
Publications and Presentations Committee:  to facilitate review of the Study Group publication and presentation policies and to review manuscripts or presentations that are Study Group initiated projects or co-authored projects  
 
External Advisory Group

Accountability:  the External Advisory Group reports through its chair to the Secretariat on all matters referred to the Group by the Steering Committee or global membership. 
 
Composition:  The External Advisory Group will include a minimum of three members, appointed by the Secretariat, who can advise on scientific, clinical and ethical matters, Additional ad hoc members can be invited at the discretion of the Secretariat.
 
Term:  Members of the External Advisory Group serve a three-year term, renewable at the discretion of the Secretariat.  
 
Meetings:  The External Advisory Group will meet by phone or in person (as funding permits) at the discretion of the Secretariat. 
 
Duties and Responsibilities: 
  • The External Advisory Group will provide guidance on clinical, scientific and other matters when requested of the Secretariat.
  • Serve as the forum for objective, unbiased review and counsel for all matters referred by the Secretariat.
  • Provide conflict resolution and, where required, act as final arbiter in matters of dispute that might arise within the governance or activities of the Study Group.
  • At the request of the Secretariat the External Advisory Group may be asked to investigate and recommend action upon charges or allegations of scientific or professional misconduct. Matters reviewed would include (but not be limited to):  professional misconduct, misrepresenting the Study Group, failure to disclose conflict of interest, use of position to obtain monetary benefits for self, family members or close associates.
Removal from the Group:  External Advisory Group members may be removed from their position by the decision of the Secretariat.
 
This charter can be amended by the Steering Committee at any time in accordance with its voting policy.
 
Terms used:
Global = worldwide, all countries are invited and encouraged to participate
Multinational = many countries are involved but it can be limited
         
Rev. 4-12-07/approved 4-26-07

 

Appendix A

General Guidelines for Publications and Presentations (P&P)

  • The P&P committee will review all manuscripts, abstracts and presentations when the Study Group is an author, co-author, or if archived Study Group data is used.
  • All manuscripts must be reviewed and approved by the publications and presentations (P&P) committee and endorsed by the Steering Committee prior to submission to a journal. The average duration of a proposal review is 6 weeks.
  • Published abstracts, publications that use Study Group data must be forwarded to the Secretariat for dissemination.
  • The name of the Study Group needs to be noted on all abstracts, presentations and manuscripts using data derived as a result of Study Group initiatives.  (See appendix B authorship guidelines)
  • All articles utilizing data of patients recruited as part of a study must acknowledge support from the study sponsor(s) including current and relevant prior funding.
Examples of manuscripts to be reviewed by the P&P committee:
    1. Study Group initiated projects
    2. The Study Group is a full participant:  project is initiated either by a member of the Study Group, a committee or an external party, but the Study Group is involved in the organization of the study, the scientific design, and funding.
    3. Study group plays a facilitative role:  individuals comes in with a project well planned, and well defined but wants to invite parties from the Study Group or advice.  Even though they are not requesting access to Study Group data, they have requested Study Group endorsement or information.  The P&P committee reviews the manuscript, and the Study Group receives acknowledgement.
    4. Study group archived data is used: The Publication and Presentation committee reviews the organization, and scientific merit of the study. 

Appendix B

Authorship Guidelines

  • The author of any presentation, abstract or manuscript resulting from a Study Group initiated project is the International Pediatric MS Study Group, with members listed in a footnote. 
  • Peer-reviewed articles on the major objectives and general demographic descriptions of the study populations should have as authors either the International Pediatric MS Study Group with membership listed in a footnote, or the members of the Study Group in the order established at the initiation of the project.  In this case, the Study Group should be the last author on these papers.  All authorship determinations will and agreed to by the Steering Committee upfront, including names and order of names, and whether the Study Group is an author or co-author. If at the initiation of the project, 1-3 individuals are felt by the Steering Committee to be the major contributors to the planning, then the Study Group becomes the co-author where few key authors may be listed “and the International Pediatric MS Study Group”
  • Authorship on publications that come out of the Study Group must be decided before the Steering Committee allows the release of data, and should include all those who have intellectual input into the work, including biostatisticians, coordinators and consultants.  The Study Group should be the last author on these papers.
  • The individuals who propose ancillary studies to the Steering Committee should decide authorship on reports of ancillary studies.
  • The invitee should decide authorship on invited reviews and chapters.  The Steering Committee will need to approve the release of any data that is not already in press in a peer review journal to such authors.
  • The Study group becomes a co-author on manuscripts, abstracts and presentations that have used Study Group archived data.  The Study Group owns the data. 
Appendix C

Data and Intellectual Property Ownership

The Steering Committee in conjunction with the Secretariat will determine the particular aspects of Intellectual Property Ownership for each project, taking into account the guiding principles of data collection noted in the charter
 

Appendix D

Conflicts of Interest, Confidentiality and Disclosure Policy

Members of the International Pediatric MS Study Group have many relationships, interests and memberships relating to their scientific and clinical expertise that are essential professionally and that contribute to the goals of the International Pediatric MS Study Group. In most situations, such interactions will not affect a person’s ability to provide a sound, objective input into the Study Group’s evaluation of a project’s scientific and/or clinical merit and relevance. But, real or perceived conflicts of interest may exist that relate to a member’s own or immediate family’s research and/or clinical activities, employment, financial holdings, membership on advisory boards, consulting relationships or other related activities.
The purpose of these policies and guidelines is to assure the integrity of the Steering Committee and operational committees’ decision-making process for establishing research and clinical priorities and to help maintain a positive image of the International Pediatric MS Study Group and its procedures.
      •     Committee members shall scrupulously avoid actual, potential or perceived conflicts of interest between their or their family’s personal, professional and business interests and those of the Study Group.
      •     Committee members shall declare actual, potential or perceived conflicts of interest when they are present and as they occur, information about which will be held in confidence. Individuals who are corporate officers, members of corporate Boards of Directors or who hold controlling interest in companies should disclose such affiliations and holdings to the Steering Committee.
       •     Committee members shall not vote on any project from which the member, his/her family, employer/institu­tion or close associates may receive a benefit or gain. Committee members will absent themselves from the meeting room during deliberations on such projects and will not attempt to influence the outcome of such deliberations with other members or staff.
      •     Committee members shall not review or vote on a letter of intent or manuscript for which the member is a consultant or collaborator or has any other direct or substantial indirect involvement or interest, and will absent themselves from the meeting room during such deliberations.
      •     Should a committee member be asked to review any project or application for support for which an unperceived or undisclosed conflict of interest exists, he/she will immediately inform the Secretariat and Steering Committee so that a reassignment may be made.
      •     Committee members shall respect the confidential nature of applications submitted and of the scientific and project review process and will neither distribute nor discuss information or materials from such applications with individuals outside of the review group. If necessary, members may share portions of an application with colleagues, on a confidential basis for purposes related to the review, after consultation with staff.
      •     Questions and concerns about these policies and procedures should be referred to Secretariat of the International Pediatric MS Study Group.
Please sign and return this certification concerning confidentiality and conflicts of interest in relation to work on behalf of the International Pediatric MS Study Group
 With this signed and dated certification, I confirm my adherence to all aspects of these policies and procedures and agree to disclose any actual, potential or perceived conflicts as they occur.”
 
Printed/Typed Name:                                                                                                           

Signature:                                                                                                                            

Date:                                                                                                                                    
 Return to:    Chair, External Advisory Group, International Pediatric MS Study Group
                        c/o Dhia Chandraratna, info@ipmssg.org
                    

 

international pediatric ms study group © 2007 info@ipmssg.org