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A research toolkit of standard measures to be expanded to further support the biomedical community

RESEARCH TRIANGLE PARK, NC— As part of a new five-year award from the National Human Genome Research Institute, RTI International will expand the PhenX Toolkit, a web-based catalog of standard measures for use in collaborative research. The Toolkit provides well established measures and the tools to use the measures in a variety of studies of human health and disease. With co-funding from the National Institute on Drug Abuse and the Office of Behavioral and Social Sciences Research, the grant supports enhancing the Toolkit’s accessibility and navigation, developing new features and expanding content to meet the evolving needs of the research community.

“This award gives the PhenX team the opportunity to extend collaborations and create new capabilities that will reduce barriers to translational research, thus reducing the time from bench to bedside,” said Carol M. Hamilton, Ph.D., director of bioinformatics at RTI and PhenX principal investigator.  “The use of PhenX measures increases the opportunities for researchers to combine or compare their findings, thus accelerating the development of treatments and interventions for human diseases and conditions.”

The PhenX Toolkit currently includes over 500 measures across 24 research domains in areas relating to public health, epidemiology, genomics and social science. Inclusion of PhenX measures facilitates consistent data collection, ranging from laboratory testing, such as complete blood count, to questionnaires dealing with mental health conditions, social circumstances, and environmental exposures. The Toolkit provides guidance for how scientists should use the measures, detailed descriptions of the data collection methods, and tools to help investigators incorporate PhenX measures into their studies and to help them share their data.  By providing standard measures to collect information about research participants, PhenX allows investigators who are studying different diseases and conditions to collect data using the same methodologies. 

“Initially intended to provide common measures for genome-wide association studies with an emphasis on common, complex diseases, the scope of PhenX has expanded to support other study designs, clinical and translational research, and rare genetic conditions,” Hamilton said.

PhenX (consensus measures for Phenotypes and eXposures) is driven by the scientific community.  With overarching guidance from a steering committee, decisions are reached using an established consensus process.  Since 2007, the RTI-led PhenX project has engaged working groups of experts to select high-priority measures and to identify detailed data collection instruments and protocols for the PhenX Toolkit. 

The PhenX Toolkit currently has more than 2,500 registered users from 155 countries and has been cited by numerous publications and articles. The Toolkit is publicly available for use at no cost at www.phenxtoolkit.org.