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PhenX Toolkit

Phenotypes and Exposures (PhenX) Toolkit

The PhenX Toolkit is a freely available, web-based catalog of standard protocols for collecting data in biomedical and epidemiologic research.

Overview

Funded by the National Human Genome Research Institute (NHGRI) along with many other NIH Institutes and Centers the PhenX Toolkit currently includes various measures from multiple research domains, with additional depth (measures) for substance abuse and addiction, mental health, tobacco regulatory, and sickle cell disease research. For each measure, the toolkit provides detailed instructions (e.g., required training and equipment); features (e.g., Spanish language versions); and bioinformatics support (e.g., data dictionaries, REDCap compatible modules) to facilitate implementation of the measures and data analysis downstream. 

Studies that use PhenX (consensus measures for Phenotypes and eXposures) measures benefit from the ability to perform cross-study analyses to increase statistical power and to replicate results. The use of PhenX measures facilitates collaboration and data sharing, thus increasing the impact of individual studies.  

The PhenX Toolkit is widely used and continues to increase the number of registered users worldwide and have been recommended in more various NIH Notice of Funding Opportunities.  

The Criteria for Selecting PhenX Protocols are intended to be low burden to participants and investigators, broadly validated demonstrating utility, clearly defined and well established, and whenever possible cross-cutting across different population groups, prior use in omics research, and open source.  These criteria  are considered by working group experts when selecting protocols for inclusion in the PhenX Toolkit.   

  • Overview

    Funded by the National Human Genome Research Institute (NHGRI) along with many other NIH Institutes and Centers the PhenX Toolkit currently includes various measures from multiple research domains, with additional depth (measures) for substance abuse and addiction, mental health, tobacco regulatory, and sickle cell disease research. For each measure, the toolkit provides detailed instructions (e.g., required training and equipment); features (e.g., Spanish language versions); and bioinformatics support (e.g., data dictionaries, REDCap compatible modules) to facilitate implementation of the measures and data analysis downstream. 

    Studies that use PhenX (consensus measures for Phenotypes and eXposures) measures benefit from the ability to perform cross-study analyses to increase statistical power and to replicate results. The use of PhenX measures facilitates collaboration and data sharing, thus increasing the impact of individual studies.  

    The PhenX Toolkit is widely used and continues to increase the number of registered users worldwide and have been recommended in more various NIH Notice of Funding Opportunities.  

    The Criteria for Selecting PhenX Protocols are intended to be low burden to participants and investigators, broadly validated demonstrating utility, clearly defined and well established, and whenever possible cross-cutting across different population groups, prior use in omics research, and open source.  These criteria  are considered by working group experts when selecting protocols for inclusion in the PhenX Toolkit.   

Project Structure

PhenX Structure

 

The Steering Committee is the governing body for the PhenX program and includes the  Principal Investigator (Carol Hamilton, Ph.D., RTI International),  NIH project scientist, and  and members of the extramural community with a wide range of expertise.

The NIH IC Liaisons are scientists from the various NIH Institute and Centers (IC) that participate in shaping PhenX by providing content-specific input and overall guidance for the program.

PhenX Working Groups are assembled for each domain to select and prioritize the measures included in the Toolkit.  Content expert panels are convened regularly to review and update protocols.

  • Project Structure
    PhenX Structure

     

    The Steering Committee is the governing body for the PhenX program and includes the  Principal Investigator (Carol Hamilton, Ph.D., RTI International),  NIH project scientist, and  and members of the extramural community with a wide range of expertise.

    The NIH IC Liaisons are scientists from the various NIH Institute and Centers (IC) that participate in shaping PhenX by providing content-specific input and overall guidance for the program.

    PhenX Working Groups are assembled for each domain to select and prioritize the measures included in the Toolkit.  Content expert panels are convened regularly to review and update protocols.

Impact

The toolkit uses statistics demonstrate uptake by the scientific community. PhenX protocols are also used in various major studies and across several REDCap Institutes internationally.  PhenX measures are also represented in the NIH CDE Repository. The impact of PhenX on the scientific community is also demonstrated by Publications and Presentations. Follow the PhenX Toolkit on X for updates on upcoming events and recent news.

Program Staff

Erin Ramos
Erin M. Ramos, Ph.D., M.P.H.
  • Deputy Director
  • Division of Genomic Medicine
Jyoti Dayal
Jyoti G. Dayal, M.S.
  • Program Director
  • Division of Genomic Medicine
Weini Ogbagiorgis
Weini Ogbagiorgis, B.S.
  • Scientific Program Analyst
  • Division of Genomic Medicine

Last updated: May 30, 2024