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PhenX Measures for Mental Health Research

On August 10, 2013, President Obama announced a National Research Action Plan (NRAP) designed to improve access to mental health services for veterans, service members, and military families.  Focused on traumatic brain injury (TBI), post-traumatic stress disorders (PTSD), and suicide prevention, the NRAP calls for the National Institute of Mental Health (NIMH), the Department of Defense (DoD) and the Veterans Affairs (VA) to identify common data elements that facilitate sharing of research data. To achieve this goal, NIMH is working with the PhenX Measures for Mental Health Research Project to select high-quality measures for inclusion in the PhenX Toolkit that will help establish a common currency to better understand the etiology, progression, and treatment of these mental health conditions. This project builds on the PhenX Toolkit (www.phenxtoolkit.org) project initiated by the National Human Genome Research Institute in 2007 and guided by the PhenX Steering Committee.

Mental Health Research Panel (MHRP)

The Mental Health Research Panel (MHRP) provides the overall direction and guidance to the PhenX Measures for Mental Health Research Project. Co-chaired by Drs. Deanna Barch and Ian Gotlib, the MHRP consists of eight mental health researchers from academic and government institutions.  The MHRP members are:

  • Deanna Barch, PhD (Co-Chair), Washington University
  • Ian Gotlib, PhD (Co-Chair), Stanford University
  • Robert Bilder, PhD, University of California – Los Angeles
  • Hendricks Brown, PhD, Northwestern University
  • Gregory Farber, PhD, National Institute of Mental Health
  • Adam Haim, PhD, National Institute of Mental Health
  • Daniel Pine, MD, National Institute of Mental Health
  • Jordan Smoller, MD, Harvard University
  • William R. Harlan, MD, Retired – National Institutes of Health, Steering Committee Liaison

The roles of the MHRP are to:

  • Refine the scope of the PTSD and Suicide Specialty Areas
  • Help Identify individuals to serve as members of the two WGs
  • Identify an MHRP member to serve as liaison to each WG
  • Identify a core set of measures for use by all mental health researchers

Mental Health Working Groups

Two WGs composed of approximately 5 scientists with relevant expertise are being established to select measures for the two specialty areas. Each WG will have a Chair or Co-chairs, include non-voting liaisons from the MHRP, NIMH, DoD, and VA, and will be supported by an RTI WG supervisor and manager.  The task of each WG is to identify up to 10 measures for each specialty area to complement those measures already in the PhenX Toolkit. Each WG will use a consensus process to recommend to the MHRP and the SC a set of high-priority measures for inclusion in the PhenX Toolkit.

The roles of the WGs

  • Review well-established scientific measures
  • Propose appropriate groups in the research community who could provide feedback on potential measures.
  • Assess feedback from the community outreach process and identify high priority measures for inclusion in the Toolkit
  • Select measures for inclusion in the Toolkit (subject to approval by the MHRP and the SC)
  • Recommend individual protocols for collecting and recording PhenX measures

Review Existing Measures

  • Identify measures and instruments currently in use in the field
  • Examine mental health related measures in the PhenX Toolkit to ensure that new measures complement existing Toolkit content
  • Assess diversity of methods used for measures and applicability to a range of study designs

Select Measures

  • Use the criteria established for all PhenX WGs to select the measures and protocols
  • Select up to 12 priority measures for community outreach for each WG
  • Describe preferred data collection methods for each measure
  • Finalize up to 10 measures and protocols to include in the PhenX Toolkit

Communication

  • Identify colleagues and individuals in the research community to review and comment on selected measures via outreach
  • Work with RTI and NIH staff to evaluate input from the scientific community on selected measures and measurement protocols
  • Identify scientific journals and professional meetings/conferences to present and promote use of PhenX measures

Criteria for Selecting Measures

A number of criteria have been suggested by the SC to guide the selection of the measures to be included in the PhenX Toolkit.

The measures should be:

  • Clearly defined
  • Well established
  • Broadly applicable and generally accepted
  • Low burden to participants and investigators
  • Well-established and have demonstrated utility
  • Reproducible
  • Specific
  • Reliable
  • Standard measurement protocols exist

Additional criteria for selecting the measures include:

  • Crosscutting relevance for population groups as well as diseases and conditions
  • Use in major reference study (e.g., NHANES)
  • Open-source software and nonproprietary instruments preferred
  • Brevity
  • Expectation of acceptance by the research community

Time Commitment

All WG members are required to:

  • Attend one in-person WG meeting in the Washington, DC metropolitan area
  • Participate in WG conference calls (estimated monthly for five months)

Suicide Working Group

The Suicide Working Group members are:

Gregory K. Brown, PhD (Chair), University of Pennsylvania

David A. Brent, MD, University of Pittsburgh

Sean Joe, PhD, University of Michigan

Matthew Nock, PhD, Harvard University

Lauren Weinstock, PhD, Brown University

Daniel Pine, MD, National Institutes of Mental Health, MHRP Liaison

Charles Hendricks Brown, PhD, Northwestern University, MHRP Liaison

Theresa Gleason, PhD, Department of Veterans Affairs Liaison

Samantha Smith, PhD, Department of Veterans Affairs Liaison

LTC Dennis McGurk, PhD, Department of Defense Liaison

Katharine Nassauer, PhD, Department of Defense Liaison

Peter Gutierrez, PhD, Department of Veterans Affairs and Department of Defense Liaison

Asha Ivey-Stephenson, Centers of Disease Control Liaison

Jane Pearson, PhD, National Institutes of Mental Health Liaison

 

Post-traumatic Stress Disorders Working Group

Danny Kaloupek, PhD (Co-Chair), Boston University

Tanja Jovanovic, PhD (Co-Chair), Emory University

Karestan Koenen, PhD, Columbia University

Amit Etkin, MD PhD, Stanford University

Charles Marmar, MD, New York University

Jordan Smoller, MD, Harvard University, MHRP Liaison

Theresa Gleason, PhD, Department of Veterans Affairs Liaison

Samantha Smith, PhD, Department of Veterans Affairs Liaison

LTC Dennis McGurk, PhD, Department of Defense Liaison

Ron Hoover, PhD, Department of Defense Liaison

Peter Gutierrez, PhD, Department of Veterans Affairs and Department of Defense Liaison

Farris Tuma, PhD, National Institutes of Mental Health Liaison

Susan Borja, PhD, National Institutes of Mental Health Liaison

 

PhenX MHRP Senior Management Team

 

RTI International

Carol M. Hamilton, PhD
Principal Investigator


Deborah Maiese, MPA
Consensus Coordinator


Tabitha Hendershot
Co-Investigator


Amanda Riley, PMP
Project Manager


Wayne Huggins, PhD
MHRP Coordinator
 

 

National Human Genome Research Institute

Erin Ramos, PhD, MPH
Project Scientist 

National Institute of Mental Health

Gregory Farber, Ph
Project Scientist 



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