PhenX Working Groups


In July 2013, a Genomic Resource Grant (U41) was awarded by the National Human Genome Research Institute (NHGRI) 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 WGs

  • Refine scope of the domain
  • Select PhenX measures based on criteria established by the PhenX SC
  • Prepare a white paper that documents the measures considered, the rationale for inclusion or exclusion, and any identified gaps



The timeline for each WG is as follows:

Month 1  Participate in an introductory conference call 
Month 2  Attend an in-person WG meeting in the Washington, DC metropolitan area 
Month 3 Discuss potential measures and measurement protocols via portal WG forum, conference calls, and emails 
Month 4  Prioritize measures and report to the SC via conference call 
Month 5-6           Acquire and incorporate comments of the scientific community 
Month 7 Make final recommendations of priority measures to the SC 
Month 8 Prepare for measures and measurement protocols to be released into PhenX Toolkit