These are the current NINR Common Data Elements (CDEs) adopted by the CSCD for Center research projects. Additional NIH CDEs are available here.

CSCD CDE Concepts

CDE Concept Name of the Measure / # Items Reference
Motivation Patient Activation Measure (PAM)/10 items (also available in Spanish) Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004 Aug;39(4 Pt 1):1005-26. PMID: 15230939.
Self-regulation Index of Self-regulation/9 items Fleury J. The index of self-regulation: development and psychometric analysis. J Nurs Meas. 1998 Summer;6(1):3-17. PMID: 9769608.
Self-efficacy Self-efficacy for Managing Chronic Disease/6 items Lorig KR, Sobel DS, Ritter PL, Laurent D, Hobbs M. Effect of a self-management program on patients with chronic disease. Eff Clin Pract. 2001 Nov-Dec;4(6):256-62. PMID: 11769298.
Global health PROMIS v. 1.1.-Global Health/10 items Hays RD, Bjorner JB, Revicki DA, Spritzer KL, Cella D. Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items. Qual Life Res. 2009 Sep;18(7):873-80. doi: 10.1007/s11136-009-9496-9. Epub 2009 Jun 19. PMID: 19543809.

Other CDE Hierarchies

Name Other Names Steward Used by Organizations Registration Status Admin Status Identifiers Questions
NINR Demographics NINR Demographics NINR NINR Qualified 5
Short Form 36-Item Health Survey (SF-36) Short Form 36-Item Health Survey (SF-36) NINDS NINDS, NINR Qualified 36
PROMIS SF v1.0-Anxiety 6a PROMIS SF v1.0-Anxiety 6a PROMIS / Neuro-QOL PROMIS / Neuro-QOL, NINR Qualified Assessment Center: 32FDB758-FB1B-492D-8C73-F2CF6C8A653B 6
PROMIS Item Bank v1.0 – Emotional Distress-Anxiety ...
Emotional Distress-Anxiety – Short Form 6a
PROMIS SF v1.0-Fatigue 6a PROMIS SF v1.0-Fatigue 6a PROMIS / Neuro-QOL PROMIS / Neuro-QOL, NINR Qualified Assessment Center: 1C3CC8B7-9F70-46A5-9616-E0A9A3403453 6
PROMIS Item Bank v1.0 – Fatigue – Short Form 6a
Fatigue – Short Form 6a
PROMIS SF v1.0 - Fatigue 6a Investigator Version
PROMIS SF v1.0 - Fatigue 6a Participant Version
PROMIS SF v1.0-Sleep Disturbance 6a PROMIS SF v1.0-Sleep Disturbance 6a PROMIS / Neuro-QOL PROMIS / Neuro-QOL, NINR Qualified Assessment Center: EFB1133D-429E-4C9D-B322-32C614CB3C9D 6
PROMIS Item Bank v1.0 – Sleep Disturbance – Short ...
Sleep Disturbance – Short Form 6a
Positive Affect and Well-Being - Short Form Positive Affect and Well-Being - Short Form PROMIS / Neuro-QOL PROMIS / Neuro-QOL, NINR Qualified Assessment Center: 38DF2C87-0858-4C1B-A0A1-D48EC4100D66 9
Neuro-QOL Item Bank v1.0 – Positive Affect and Wel ...
PROMIS SF v1.0 - Applied Cog General Concerns 6a PROMIS SF v1.0 - Applied Cog General Concerns 6a PROMIS / Neuro-QOL PROMIS / Neuro-QOL, NINR Qualified Assessment Center: A09CDF4E-E70C-40DC-849D-756A7C60C454 6
Applied Cognition-General Concerns-Short Form 6a
PROMIS v1.0-Applied Cognition-General Concerns-Sho ...
PROMIS SF v.1.0 – Pain Intensity 3a PROMIS SF v.1.0 – Pain Intensity 3a PROMIS / Neuro-QOL PROMIS / Neuro-QOL, NINR Qualified Assessment Center: 7224FB55-81D7-4131-A136-8C89907CDFBB 3
Pain Intensity – Short Form 3a
Depression – Short Form 6a Depression – Short Form 6a PROMIS / Neuro-QOL PROMIS / Neuro-QOL, NINR Qualified Assessment Center: 7B1EF457-E187-4E47-8179-FFF821A72584 6
PROMIS Item Bank v1.0 – Emotional Distress – Depresion