Notice Announcing the Availability of Common Data Elements for Research Related to Symptom Science in NINR Centers Program

Notice Number: NOT-NR-16-001

Key Dates
Release Date:  November 16, 2015

Related Announcements
RFA-NR-16-002
RFA-NR-16-001    

Issued by
National Institute of Nursing Research (NINR)

Purpose

The purpose of this Notice is to announce the data-harmonization effort at the National Institute of Nursing Research (NINR) in the NINR Centers P30 RFA-NR-16-002 and P20 RFA-NR-16-001 programs.

One way to improve the 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.

With this Notice, NINR announces the availability of a set of common data elements (CDEs) for use by P20 and P30 researchers who are collecting data from human subjects related to symptom science. The new collection of common data elements is available via the National Library of Medicine’s NIH CDE Repository https://cde.nlm.nih.gov/form/search?selectedOrg=NINR. NINR applicants under the Current P20 and P30 FOAs must incorporate one or more of these measures as relevant to their symptom science pilot projects.

NINR recognizes that Center applicants may have longstanding data collection protocols that do not incorporate the 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 other CDEs that have been established.

CDEs for symptom science must be used across center pilot studies in the self-management of symptoms in one or more of following symptoms areas:

Symptom

CDE

Pain

  • PROMIS SF v.1.0 – Pain Intensity 3a

Fatigue

  • PROMIS SF v1.0 – Fatigue 6a

Sleep

  • PROMIS SF v1.0 – Sleep Disturbance 6a

Affective-mood

  • Positive Affect and Well-Being – Short Form 6a
  • Depression – Short Form 6a

Affective-anxiety

  • PROMIS SF v1.0 – Anxiety 6a

Affective-well being

  • Positive Affect and Well-Being - Short Form  
  • Short Form 36 – Item Health Survey (SF-36)

Cognitive

  • PROMIS SF v1.0 – Applied Cog General Concerns 6a

Demographics

  • Ethnicity
  • Race
  • Educational level
  • Date of birth
  • Gender

 

Link: https://cde.nlm.nih.gov/form/search?selectedOrg=NINR

Inquiries

Please direct all inquiries to:

Donna Jo McCloskey, PhD, RN, FAAN
National Institute of Nursing Research (NINR)
Telephone: 301-594-5971
Email:  mccloskd@mail.nih.gov