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Common Measures for National Institute of Mental Health Funded Research

Published:February 20, 2016DOI:https://doi.org/10.1016/j.biopsych.2015.07.006
      One of the most encouraging, but also the most challenging, aspects of current research on psychopathology is the diversity of measures used to assess constructs across research studies and programs. Clearly, this diversity reflects the creativity and generativity of our field and the continual growth of our science. At the same time, however, this diversity also makes data harmonization across studies difficult, if not sometimes impossible. The National Human Genome Research Institute recognized this conundrum in the field of genetics and started an initiative referred to as consensus measures for Phenotypes and eXposures (PhenX) to identify and recommend a small number of measures for each of 21 broad research domains that could be used as common assessments to facilitate integration across genome-wide association studies (
      • Hamilton C.M.
      • Strader L.C.
      • Pratt J.G.
      • Maiese D.
      • Hendershot T.
      • Kwok R.K.
      • et al.
      The PhenX Toolkit: Get the most from your measures.
      ,
      • McCarty C.A.
      • Huggins W.
      • Aiello A.E.
      • Bilder R.M.
      • Hariri A.
      • Jernigan T.L.
      • et al.
      PhenX RISING: Real world implementation and sharing of PhenX measures.
      ,
      • Pan H.
      • Tryka K.A.
      • Vreeman D.J.
      • Huggins W.
      • Phillips M.J.
      • Mehta J.P.
      • et al.
      Using PhenX measures to identify opportunities for cross-study analysis.
      ,
      • Stover P.J.
      • Harlan W.R.
      • Hammond J.A.
      • Hendershot T.
      • Hamilton C.M.
      PhenX: A toolkit for interdisciplinary genetics research.
      ). These measures are made available to the scientific community, at no cost, in the PhenX Toolkit (https://www.phenxtoolkit.org). Subsequently, the PhenX consensus process was used to identify measures in support of substance abuse and addiction (SAA) research, adding depth to the toolkit in this area. This project was funded by the National Institute on Drug Abuse (NIDA) with the participation of the National Institute on Alcohol Abuse and Alcoholism. Perhaps due to a growing awareness of the need to share data across studies to increase statistical power and study impact, a number of other common data element programs have been underway, including the Patient-Reported Outcomes Measurement Information System (
      • Cella D.
      • Yount S.
      • Rothrock N.
      • Gershon R.
      • Cook K.
      • Reeve B.
      • et al.
      The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap cooperative group during its first two years.
      ), the National Institutes of Health (NIH) Toolbox (
      • Gershon R.C.
      • Cella D.
      • Fox N.A.
      • Havlik R.J.
      • Hendrie H.C.
      • Wagster M.V.
      Assessment of neurological and behavioural function: The NIH Toolbox.
      ), the Neurological Quality of Life (
      • Perez L.
      • Huang J.
      • Jansky L.
      • Nowinski C.
      • Victorson D.
      • Peterman A.
      • Cella D.
      Using focus groups to inform the Neuro-QOL measurement tool: Exploring patient-centered, health-related quality of life concepts across neurological conditions.
      ), the National Institute of Neurological Disorders and Stroke Common Data Elements program (
      • Saver J.L.
      • Warach S.
      • Janis S.
      • Odenkirchen J.
      • Becker K.
      • Benavente O.
      • et al.
      Standardizing the structure of stroke clinical and epidemiologic research data: The National Institute of Neurological Disorders and Stroke (NINDS) Stroke Common Data Element (CDE) project.
      ,
      • Loring D.W.
      • Lowenstein D.H.
      • Barbaro N.M.
      • Fureman B.E.
      • Odenkirchen J.
      • Jacobs M.P.
      • et al.
      Common data elements in epilepsy research: Development and implementation of the NINDS epilepsy CDE project.
      ), and the NIH Common Data Elements program (http://www.nlm.nih.gov/cde/). The program staff at the National Institute of Mental Health (NIMH), as well as its funded researchers, have also recognized the challenges posed by a lack of common measures across studies. The NIMH has taken note of this recent emphasis on larger scale studies to address core questions about the mechanisms of psychopathology and recent attempts at data harmonization across studies of psychopathology that address similar issues. Accordingly, the NIMH felt that it was time to identify brief, low-burden measures that NIMH-funded researchers could include in their studies to increase cross-study data compatibility. The goal of the current report is to briefly describe the genesis and development of the PhenX project, to outline the process that the Mental Health Research Panel used to select a set of common measures, to describe the measures themselves, and to outline the goals associated with including these measures in future studies.
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