In July 2013, a Genomic Resource Grant (U41) was awarded by the National Human Genome Research Institute to RTI International to:
- Enhance and update the PhenX Toolkit content;
- Implement new Toolkit capabilities and features;
- Map PhenX variables to completed studies in dbGaP; and
- Continue and extend our collaborations.
The Genomic Resource Grant will build on the work that has been done to identify standard measures for the 21 research domains and the Substance Abuse and Addiction Collections of measures. First assembled in 2007, the PhenX Steering Committee (SC) has been re-established to support and guide this consensus based process that identifies standard measures for collaborative research.
Liaisons from the National Institutes of Health (NIH) will continue to be key stakeholders in the PhenX Toolkit. NIH liaisons are invited to participate in SC and Working Group (WG) meetings, may serve as WG members, and help disseminate information about the PhenX Toolkit to the research community.
WGs composed of six to eight scientists with relevant expertise will be established for each of four new domains. Each WG will have a chair or co-chairs, include a liaison from the SC, and will be supported by an RTI WG manager and supervisor. It is anticipated that two WGs will be formed in FY 2014; one in FY 2015; and one in FY 2016. The task of the WG is to identify up to 15 measures for each domain. Each WG will use a consensus process to deliver a set of high-priority measures for inclusion in the PhenX Toolkit.
Expert Review Panels (ERPs) composed of up to three scientists with relevant expertise will also be established to review existing domain-specific content in the Toolkit. Each ERP will be supported by an RTI review panel manager and a domain expert. It is anticipated that each ERP will address four domains in FY 2014; six in FY 2015; six in FY 2016 and five in FY 2017.
Roles of the Steering Committee
- Provide guidance to the PhenX team to establish policy and ensure adherence to that policy over the course of the project.
- Assist with establishment of domain-specific WGs and the ERPs charged with reviewing the existing content in the Toolkit.
- Help build consensus and acceptance in the scientific community by identifying opportunities for interactions and communications with the scientific community.
Prioritize New Domains
- Review project timeline
- Review and refine criteria and guidance for measure selection and domain reviews
- Coordinate with related initiatives at NIH and elsewhere
Establish Working Groups
- Nominate domain-specific WG and ERP members Provide guidance to the WGs and ERPs
Establish Expert Review Panels
- Review and comment on draft materials from the WGs and ERPs
- Participate, as interest and time permit, in domain-specific WGs
Communication and Consensus Building
- Help build consensus in the scientific community on this project and its deliverables
- Identify opportunities for interactions and communications with the scientific community
- Report on an ongoing basis through the NHGRI Project Scientist to the NHGRI Director and Advisory Council
- Communicate on an ongoing basis with the RTI team to ensure that the PhenX Toolkit is a practical and effective resource and continues to meet the evolving needs of the biomedical research community
- Attend two in-person SC meetings a year in the Washington, DC metropolitan area
- Participate in SC conference calls (estimated at four calls per year)
Past Committee Members
Accomplishments of the U01 PhenX Steering Committee
December 2008-January 2012
- Reviewed project timelines.
- Reviewed and refined criteria for prioritizing domains.
- Identified 21 priority domains for the project to address.
Establishing Working Groups
- Nominated domain-specific WG members
- Identified one SC member to serve as a liaison to each WG.
- Provided guidance to the WG by establishing preliminary scopes for each of the 21 domains
- Established criteria for WG members to consider when identifying measures for the PhenX Toolkit.
Communication and Consensus Building
- Helped build consensus in the scientific community on this project and its deliverables.
- Identified opportunities for interactions and communications with the scientific community.
- Reviewed and commented on materials from the WGs.
- Reviewed and approved each WG’s proposed measures for inclusion in the Toolkit.
- Reported on an ongoing basis through the NHGRI Project Scientist to the NHGRI Director and Advisory Council.
- Communicated on an ongoing basis with the RTI team to ensure that the PhenX Toolkit is a practical and effective resource for genomic and epidemiologic research.
- Coordinated with related initiatives at NIH and elsewhere.
Planning the PhenX Toolkit
- Contributed to the design of the PhenX Toolkit.
- Finalized the standardized measures for inclusion in the PhenX Toolkit.
SC Time Commitment
- Attended three in-person SC meetings a year in the Washington, DC metropolitan area.
- Participated in conference calls of the SC (approximately three calls per year).
- Participated in domain-specific WGs as interest and time permitted