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Affiliate Membership Policy

Date Approved: April 20, 2022
Date of Last Update: April 21, 2022
Version: 1.0

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Scope

This policy establishes an “expertise only” Affiliate Membership tier in PRIMED, to enable subject matter experts not eligible for Core Membership to actively participate in the PRIMED Consortium. Applicant information, selection criteria, benefits, responsibilities, and application process are described in this policy document. Specific details of how Affiliate Membership relates to other Consortium activities (e.g. Consortium data access) may be found in other policies (see “Related Policies” section below). Core Membership is also addressed in a separate policy. Additional types of Affiliate Membership may be defined in future iterations of this policy, e.g. to specify data access or data contribution.

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Applicant information

Applicants for PRIMED Affiliate Membership are typically individuals that are interested in actively contributing to the development and evaluation of polygenic risk scores (PRS) to estimate disease risk and enabling improved applicability of PRS in diverse ancestry populations. Affiliate Membership is conditional on agreement and adherence to the criteria for participation described below.

Criteria

Applications from those who wish to become PRIMED affiliate members will be assessed on a case-by-case basis. The primary criteria for an “expertise only” affiliate are:

  • Willingness to engage with other PRIMED investigators and actively participate in Consortium activities
  • Contribution of relevant expertise that is of interest to and within scope of the PRIMED Consortium
  • Willingness to abide by the Consortium policies related to data sharing and publication of results

Applications from individuals in the private sector and/or for-profit entities to participate or provide cost-free or in-kind services to PRIMED will be assessed separately by National Human Genome Research Institute (NHGRI) staff and the PRIMED Executive Committee to ensure compliance with applicable NHGRI, National Institutes of Health (NIH) and federal government legal-, ethical-, and conflict of interest-related policies.

Benefits

Benefits for “expertise only” affiliates may include:

  • Access to PRIMED-developed resources (e.g. internal website, Consortium meetings; Consortium data access not included)
  • Shared expertise in multidisciplinary areas 
  • A rich, collaborative environment with multiple sites 
  • Participation in PRIMED Working Groups and Working Group products when appropriate
  • Co-authorship on PRIMED manuscripts, when merited by contributions and arranged early in manuscript development

Responsibilities

Responsibilities and expectations of “expertise only” affiliate include:

  • Agreement to adhere to Consortium policies, guidelines and agreements, including the PRIMED Consortium Code of Conduct, Publications Policy, and Data Sharing Policy.  
  • Agreement to participate in PRIMED Consortium activities, including attending calls for the Working Group(s) they join and contributing to the products of these groups.
  • Agreement from each participant to contribute significantly to the project, bringing their particular expertise to bear on accomplishing the goals of the Consortium in a timely manner. Participation in the Consortium should consist of more than submission of data to the Consortium and should include substantial intellectual contributions to the Consortium.
  • Agreement from each participant that they will not disclose confidential information obtained from other members of the Consortium.

Additional responsibilities and criteria for membership may be added upon recommendations of the PRIMED Steering Committee, PRIMED Executive Committee, and/or NIH program staff.

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Application Process

An investigator who is interested in applying for Affiliate Membership to the PRIMED Consortium should provide the required information in no more than two pages.

The application will be submitted to the PRIMED Coordinating Center for pre-review to ensure that the application is complete and that the expertise, research interest, and/or proposed project ideas appear to be in scope for the PRIMED Consortium.

The application will then be reviewed by the PRIMED Executive Committee, optionally in consultation with relevant Working Group(s). The Executive Committee will then make a recommendation to the Steering Committee on whether to approve the application. A recommendation for approval will be based on the following criteria:

  • Applicant has relevant expertise to participate in the Consortium; 
  • Applicant clearly states their reasons for applying and their planned contributions;
  • Proposed research is of interest to and within scope of PRIMED;
  • Investigator has time and commitment to contribute to one or more PRIMED projects

Applicants will be notified as quickly as possible once a determination has been made or if there are questions from the Executive Committee, Steering Committee, or relevant Working Group(s) that must be addressed to move forward.

Affiliate members will be reviewed annually by the Executive Committee to ensure continued interest, contribution, and engagement.

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Change Log

  • V1.0 - Initial Policy
  • V0.1 - Based on CSER and eMERGE Affiliate Member Policies
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