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