Notice Announcing the Availability of Common Data Elements for Research Related to Eating Disorders

Notice Number: NOT-MH-15-031

Key Dates
Release Date: September 29, 2015

Related Announcements
NOT-MH-20-067
NOT-MH-15-009

Issued by
National Institute of Mental Health (NIMH)

Purpose

The purpose of this Notice is to extend the data-harmonization effort at the National Institute of Mental Health (NIMH) announced in NOT-MH-15-009.

One way to improve the yield and impact of research in any area of science is to provide investigators with a common set of tools and resources to facilitate sharing, comparing, and integration of data from multiple sources. NIMH has already made significant investments in data repositories such as the National Database for Autism Research (NDAR), the National Database for Clinical Trials Related to Mental Illness (NDCT), and the Research Domain Criteria Database (RDoCdb). These repositories allow data from multiple sources to be aggregated and easily accessed by the research community.

With this Notice, NIMH announces the availability of a set of common data elements (CDEs) for use by researchers who are collecting data from human subjects related to eating disorders. The new collection of common data elements is available via the PhenX Toolkit at https://www.phenxtoolkit.org/index.php?pageLink=browse.conceptualgroups&id=2910&breadcrumbs=2910. NIMH grantees/applicants are strongly encouraged to incorporate these measures into research protocols and are discouraged from using alternative measures to collect similar data.

NIMH recognizes that researchers may have longstanding data collection protocols that do not incorporate the recommended measures. In such situations, it may be necessary to collect data using more than one measure to ensure compatibility with legacy data as well as to allow data from multiple laboratories to be easily aggregated as the field moves forward. Researchers may also want to include additional measures of a construct to best address their hypotheses. This Notice does not preclude the use of measures in addition to the common data elements (CDEs) that have been established.

In order to allow investigators to prepare to administer new instruments and to budget appropriately, NIMH expects that applications submitted for funding after February 1, 2016 will incorporate these measures in all research proposed that involves human participants. Current NIMH awardees are invited to talk to their program officer about the possibility of an administrative supplement to allow common data elements to be collected in ongoing studies.

Through the use of these measures, NIMH-funded researchers will be better able to share, compare, replicate findings, and integrate data across studies. By advocating the use of these common measures and aggregating the data in the repositories listed above, NIMH aims to optimize the value of this research and further accelerate and enhance our understanding of mental illness, while advancing a culture of scientific collaboration.

Inquiries

Please direct all inquiries to:

Gregory K. Farber, Ph.D.
National Institute of Mental Health (NIMH)
Telephone: 301-435-0778
Email: farberg@mail.nih.gov