March 2008

  1. Size and Shape of the New Consortium.

    The Consortium consist of four parts:

    • Governance Group
      1. A small, stable group of experienced individuals who work well together and can be trusted to do what is best for multiple sclerosis genetics. This group has responsibility for setting the long term agenda, tone and principles behind the Consortium. It is also charged with settling disputes and ultimately has the final word.
      2. Five members (currently, in alphabetical order, Alastair Compston, David Hafler, Steve Hauser, and Graeme Stewart) Will meet ad hoc.
      3. Term limit of three years, renewable.
    • Strategy Group
      1. Larger group (10-20) within which most of the work of the Consortium is done. It is anticipated that most strategic decisions will be made by this group.
      2. Composed of principal (independent) investigators, each appointed by the Governance Group.
      3. Each member of the Strategy Group must either bring a substantial number of multiple sclerosis DNAs and/or a key skill set or technical capacity of value to the Consortium. (See below for details.)
      4. Meets monthly be telephone and occasionally in person.
      5. Reaches decisions by informal consensus of those participating in calls; not by formal vote.
      6. Term limit of three years, renewable. (Renewals are the decision of the Governance Group.)
      7. Disputes or impasses are settled by Governance Group.
    • Working Groups
      1. Temporary ad hoc groups established by the Strategy Group to pursue specific and time limited projects that are better handled by smaller, specialist groups.
      2. A chair is appointed for each Working Group.
      3. Working Groups report progress and findings to the Strategy Group.
      4. Working Groups meet by teleconference according to a timetable established by each Working Group chair.
    • Regular Members
      1. A large group with no strictly defined membership criteria.
      2. Regular Members can only be added under the auspices of individual members of the Strategy Group.
      3. Regular Members are added to the email listserv.
      4. Regular Members can listen in and participate in teleconference calls, and can join Working Groups, if approved by their Strategy Group representative.
  2. Strategy Group in More Detail
    • Current Members:
      • Lisa Barcellos (University California Berkley)
      • Mark Daly (Massachusetts General Hospital)
      • Jonathan Haines (Vanderbilt University)
      • Adrian Ivinson (Harvard University)
      • Phil de Jager (Brigham & Women’s Hospital)
      • Jorge Oksenberg (University California San Francisco)
      • Peggy Pericak Vance (University Miami)
      • John Rioux (Montreal University)
      • Stephen Sawcer (Cambridge University)
    • New Members must be independent investigators who are able to submit a substantial number (generally more than 500) multiple sclerosis DNAs that meet the following criteria:
      1. Samples may be submitted to a Consortium repository.
      2. At least 25ug genomic DNA to be provided.
      3. Consented for common/shared use including beyond country of origin.
      4. Taken from well-characterized patients.
    • All Strategy Group investigators are equal contributors and are encouraged to participate in the monthly teleconference meetings.
    • All Strategy Group investigators are allowed to involve a small number of their students, staff and close colleagues into the group as Regular Members, but all such Regular Members will remain under the guidance and sanction of their Strategy Group representative.
  3. DNA Repositories
    • The purpose of the shared repositories is to facilitate large scale genetics projects undertaken collaboratively by the entire Consortium group and generally representing experiments that could not be accomplished by individual groups.
    • Whereas it is assumed that such projects will be relatively rare, the existence of repositories will facilitate rapid and efficient assembly of samples to be used toward the common goals of the Consortium members.
    • Samples have been submitted to a repository in Miami and are currently being assembled at a second repository site at the Sanger Center in Cambridge (for the new WGAS study).
    • Whereas submitted samples are stored in the repositories, all samples remain under the direct control of the investigator who submitted the samples.
    • Any investigator who has submitted samples to either repository may at any time, for any reason, request the immediate repatriation of all of their samples.
    • Any project that calls for use of repository samples must be approved by both the Strategy Group and the Governance Group.
    • Once a project has been approved, use of repository DNA samples for that project requires the express, written permission of the samples’ designated custodian. Use of any samples is an “opt-in” process and custodians may withhold their permission for any project.
    • Whereas the primary purpose of the repositories is to facilitate large scale genetic studies undertaken collaboratively by the Consortium, individuals or groups within the Consortium may request access to repository samples for local projects. Investigators who have submitted samples to the repositories may decline to have all or some of their samples used for this purpose.
    • If a Consortium member has been approved to conduct a particular local project using any repository samples, they must follow through according to an agreed timetable, and must promptly return unused samples to the repository.
    • All data generated from any Consortium-sanctioned project (shared or local) must be submitted to the Consortium Data Repository.
    • No repository samples will be used for any purpose without the express permission of the investigator who contributed those samples. No member of the Consortium may access any samples other than via the above procedures.
  4. Project Decisions
    • Any project (large or small) using samples from either repository or using unpublished Consortium data, must be formally proposed to the Strategy Group.
    • Each proposal to include:
      1. A description of what samples are required.
      2. A description of the genotyping and analysis to be performed.
      3. A timetable.
      4. The name of the Strategy Group member who will be responsible for the project and a list of others who will be involved.
      5. Confirmation of how data will be submitted to the Data Repository.
      6. A publishing/authorship plan.
    • All proposals will be distributed to all Strategy Group and governance Group members.
    • Each proposal will be discussed during Strategy Group meetings and either approved or declined by consensus.
    • If a project is approved, no samples will used without the express permission of the investigators who contributed those samples.
  5. Publishing/Authorship
    • All project proposals must include a specific publishing/authorship plan.
    • Typically the plan will be one of the following three options:
      1. A full consortium paper: The Consortium is listed as the author with a list of individual contributors made according to the journal’s style preference. (This option must include a suggestion for corresponding author(s).) See NEJM 357, 851-862 (2007) for example.
      2. A partial Consortium paper: Individual authors listed. The Consortium name is included in the author list. (This option must include a list of authors.)
      3. A local paper: Simply acknowledges the Consortium. (This option to state who will take responsibility for the paper.) See HMG, 15, 2813-2824 (2006) for example.