GREGoR Consortium Partner Membership Policy

Date Approved: May 18, 2022

Date of Last Update: August 25, 2023

Version: 1.3

Background

The NHGRI GREGoR (Genomics Research to Elucidate the Genetics of Rare diseases) Consortium seeks to discover the cause of currently unexplained rare genetic disorders through innovative technology and vigorous collaboration.



The GREGoR Consortium offers investigators not funded by the primary NHGRI awards to the GREGoR Consortium the opportunity to apply to join the program as non-voting Partner Members.

Scope

The scope of this policy extends to the membership, activities, and expectations of GREGoR Partner Members.

Policy

Partner Members function independently of the GREGoR centers, and may comprise either an individual researcher or a research team at a single institution or entity. Research teams will define a Principal Investigator (PI) as the point-of-contact for their team’s GREGoR activities. Partner Members are expected to contribute to the research goals of the Consortium throughout their membership, such as through generating and/or sharing data consented for general research or health and biomedical use; analyzing GREGoR-generated data; performing functional studies on candidate variants or genes of interest to GREGoR; jointly developing open-source software or algorithms; or coordinating development of standards, formats or metadata.

Partner Membership responsibilities:

  1. Partner Members are also encouraged to actively engage in GREGoR Consortium activities as non-voting members. This includes participating in meetings for: Steering Committee, Science Seminar Series, Functional Omics and New Technologies (FONT) Working Group (WG) and Sub-WGs, Data Standard & Analysis WG and Sub-WGs, and any consortium wide Consortium meetings. Typically, Partner Members would not be engaged in the Policy WG or the Opportunity Funds Sub-Committee. Partner Members are invited to attend Consortium annual meetings.
  2. Partner Members agree to abide by all policies approved by the GREGoR Consortium (https://gregorconsortium.org/policies), including the Data Use Agreement, Data Sharing Policy, Publication Policy, and any other pertinent National Institutes of Health (NIH) policies. All genomic, other -omic, and phenotype data generated by a Partner Member in relation to their work with the GREGoR Consortium will be shared in AnVIL.
  3. Annual reporting: Partner Members are required to provide annual updates to the Steering Committee describing all results from Partner Member analyses, as well as any software or tools developed and/or applied to Consortium Data. As part of this annual report, Partner Members will provide updates regarding planned and submitted publications that cite Consortium activities.
  4. Each Partner Member should already have the necessary funding to carry out the research plans. Partner Members are eligible to apply for opportunity funds through the GREGoR Consortium. Investigators who receive funding through the opportunity funds mechanism of the GREGoR Consortium are expected to become Partner Members of GREGoR.
  5. Each Partner Member will not disclose confidential information obtained from other members of the Consortium. Non-disclosure is covered in the GREGoR Code of Conduct, which all Core and Partner Members sign when onboarding to GREGoR.
  6. To access data generated by the GREGoR Consortium, the Partner Member PI signs the GREGoR Data Sharing Agreement or obtain access through a dbGaP request.

Eligibility:The application for GREGoR Partner Membership is open to academic, nonprofit and government organizations and individuals that are interested in contributing actively in an open process to facilitate genomic research to discover the causes of rare disease. Private sector and/or for-profit entities that wish to become GREGoR Partner Members will be assessed on a case-by-case basis to ensure compliance with applicable NHGRI, NIH and federal government legal-, ethical-, and conflict of interest-related policies. Offers by third parties, including GREGoR Partner Members, to participate or provide cost-free or in-kind services to the GREGoR Consortium will also be assessed on a case-by-case basis by NHGRI.Members of the GREGoR External Scientific Panel (ESP) are eligible to apply. An ESP member who is also a GREGoR Partner Member would be asked to recuse themselves from any discussion regarding reallocation of resources in which there could be a real or perceived conflict of interest.



Application Process: An investigator who is interested in applying for Partner Membership to the GREGoR Consortium should apply on the GREGoR Consortium website and provide a brief description of the proposed work and how it will contribute to the GREGoR Consortium. Program staff will then provide further guidance about the application process. Application for Consortium membership will be reviewed and voted on by the GREGoR Consortium Steering Committee to determine whether an investigator will be accepted into the Consortium. If necessary, some applicants may be asked to prepare a brief presentation of their proposed work as a potential Partner Member at a Steering Committee meeting.

Recipients of Opportunity Funds (OF) Research Grants do not need to apply separately for Partner Membership:

  • OF Research Grant awardees are by default Partner Members for the duration of their OF award;
  • OF Professional Development awardees would need to apply separately for Partner Membership

Onboarding Process: Once accepted, Partner Membership status will be extended to relevant laboratory members, graduate students, and post-doctoral members. Participation of Partner Members in Consortium activities will be reviewed yearly by the Steering Committee to ensure active participation that is continuing to contribute to the central goals of GREGoR.

Partner Members contributing data to the Consortium will additionally need to

To access pre-release Consortium data, Partner Members (including those contributing data) will need to sign the GREGoR Data Sharing Agreement

  • Note Partner Members who do not access pre-release Consortium data will have the opportunity to apply to released GREGoR data as would any member of the scientific community

Offboarding Process: When Partner Membership ends, access to the internal Consortium website will be suspended. At any time, a Partner Member can ask to leave the Consortium, but is expected to honor the confidentiality of any information obtained during Consortium membership as appropriate through standard research collaboration practices.

Related Policies

Definitions

  • GREGoR Partner Member – A GREGoR Partner Member is an individual researcher or research team at a single institution or entity who is a non-voting, active investigator in the GREGoR Consortium, but who is not funded by the primary NHGRI awards to the GREGoR Consortium.

Change Log

  • V1.3 - Minor clarification that Partner Members are eligible to attend Consortium annual meetings.
  • V1.2 - Minor clarification added that ESP members are eligible to apply for partner membership.
  • V1.1 - Minor clarifications added:
    • A Partner Member is from single institution or entity
    • Onboarding steps, including signing the DSA and providing an IC if contributing data
    • Offboarding steps
  • V1.0 - Initial Policy