About the ACMG Evidence-Based Guidelines Program

The Evidence Based Guidelines (EBG) Program is an important joint effort between the ACMG Foundation and ACMG. The EBG Program develops unbiased guidelines in medical genetics and genomics and provides a solid evidence base to demonstrate the clinical utility of genetic or genomic services. ACMG’s guidelines help clinicians make informed decisions regarding the use of genetic and genomic testing and aid both government and private health insurers in determining coverage options for new tests and treatments.

The ACMG Foundation is working to build support for this critical program. With your help, ACMG will develop, publish, and regularly update evidence-based guidelines. The support of individuals, foundations, and corporate donors will ensure that ACMG can disseminate guidelines more often and more quickly, now and in the future.

The documents linked below detail the need for ACMG’s EBG Program and explain the program’s management, operations, and funding goals. The materials included on this page also detail next steps, the expectations of the ACMG Board, and the role of our members.

Background on the EBG Program

Overview, Current Activities, and Press Documents

  • Please read our October 2022 EBG Update and 2023 supplement here.
  • Our January 2022 EBG Update can be found here. We detail the status of all current guideline efforts and list other pending topics submitted to the program. We also discuss the growing staff at ACMG working on this mission-critical project.
  • Our June 2021 Semi-Annual Update can be found here. We discuss how we are strengthening EBG Program staff and provide detail on several ongoing projects.
  • Click this link to read our Q1 2021 Update on the EBG Program. Learn where our three main guideline updates are in the review process and read about our plans for 2021.
  • Click this link to read the Q3 2020 overview of the EBG Program, the topics under review, and those we may consider in the future.
  • A 2019 press release announcing the launch of the EBG Program can be found here.
  • A Nov. 2020 press release announcing a major development in fundraising can be found here.
  • Please click here to read the one-page overview of the EBG Program. This is perhaps the best entry point to the effort.

Related Committee Information

  • The Members of the Topic Selection Committee are published here.
  • In addition, Q & A with Dr. Laurie Demmer, Chair of the Topic Selection Committee for ACMG’s New Evidence-Based Guidelines Program can be found here.

Get Involved – Submit a Topic

  • The Topic Selection Committee’s Topic Nomination Form is the mechanism that healthcare professionals may use to submit feedback and guideline topic ideas to the ACMG for further consideration. For the time being, ACMG is not accepting new topics for EBG development.

Detailed Background Documents

  • For those who wish to learn more about ACMG’s Evidence Based Guideline Program please review the “Four Year Launch Plan,” which details ACMG’s goals and the role of the ACMGF. This document also details ACMG’s long tradition as an organization and our prior accomplishments with Guideline Development.
  • The ACMG Board and staff developed a Protocol Manual for the EBG program in 2014, revised it again in 2019 as they launched the full EBG Program, and again updated the document in 2022 to reflect the growth of the program. The updated Manual, found here, guides the ACMG Board and committee members in the development of evidence-based guidelines.
  • The development of each new guideline will demand a tremendous investment of staff time at every level of the organization. Two areas will be crucial for the successful management of this program:
    • A dedicated EBG Fund for donations from all sources that includes a firewall between the fundraising teams on the side of the ACMG Foundation and the scientific teams working under the banner of the ACMG. Documents that outline the ACMG Foundation’s “Guidelines Fund” can be found here.
    • A carefully managed budget will ensure that resources raised for this effort will be directed towards the proper resources to ensure a successful effort each time a new guideline is published. To review some sample budgets that the ACMG Foundation drafted as goals for both the overall program and for fundraising targets, please click this link.

More Information

For questions related to the Evidence Based Guidelines Program, please contact the ACMG Foundation at acmgf@acmgfoundation.org.