PROMIS Item and Instrument Copyright Statement and Users’ Agreement

The PROMIS network/institutions make no representation that the use of PROMIS Data/Materials supplied by them will not infringe on any patent or other proprietary rights.  The PROMIS network/institutions shall not be liable for any claims, losses, or damages resulting from the use of PROMIS Data/Materials or for any loss, claim, damage, or liability of any nature which may arise in connection with use, handling, or storage of the PROMIS Data/Materials, or the research to be conducted with the PROMIS Data/Materials.  Users of PROMIS instruments are expected to remain in compliance with all applicable federal, state, and local laws and regulations, and any lack of compliance shall be at their own risk.

PROMIS instrument users agree to the Terms and Conditions available at www.assessmentcenter.net/ac1/ and summarized below:

To encourage their use, PROMIS Version 1.0 item banks and instruments are being released to measure self-reported fatigue, pain, physical function, social function, emotional distress, sleep disturbance and Sleep-related Impairment. These tools were developed in the English language using extensive qualitative methods to ensure conceptual and semantic clarity. They have been tested for reliability and comparability to more established measures of these same content areas. Testing in over 20,000 individuals from the United States (U.S.) general population has resulted in individual item calibrations that enable one to generate a T-score (mean=50; standard deviation = 10) based on a sample of people in the general U.S. population. Included in this first wave of PROMIS item testing were several clinical samples. The item calibrations and test statistics provided under PROMIS Version 1.0 are all based upon cross-sectional data collection. PROMIS Version 1.0 item banks have not yet been tested longitudinally in clinical or non-clinical samples; therefore information on the responsiveness of PROMIS item banks is unavailable. Their use in clinical research is encouraged, with the understanding that data collected from that use will contribute to knowledge about the validity of PROMIS measures. Therefore, until validity data are more mature, users of promis version 1.0 tools are required to submit a BRIEF report INCLUDING SAMPLE DEMOGRAPHIC INFORMATION, CLINICAL data sufficient to define the sample without indicating treatment response data, and promis score distributions (e.g., baseline mean and standard deviations or change scores blinded to treatment information). This should be submitted to assessmentcenter@enh.org for internal review. None of this submitted information will be published without the written consent and participation of the submitter. In addition to the brief report, clinical researchers are encouraged to submit de-identified data for collaborative analysis and reporting. Data ownership would remain with the submitter.  Clinical researchers are strongly encouraged to collaborate with PROMIS investigators when applying these items and banks to their research.  

ANY PUBLICATION OR PRESENTATION OF RESULTS OBTAINED FROM STUDIES CONDUCTED USING THESE BANKS SHOULD INCLUDE A STATEMENT THAT PROMIS VERSION 1.0 ITEM BANKS WERE USED, AND REFERENCE THIS SITE (www.nihpromis.org) FOR FURTHER INFORMATION.

Permission to use PROMIS version 1.0 does NOT grant permission to modify the wording or layout of items, to distribute to others for a fee, or to translate items into any other language. Such permission to modify, distribute, or translate must come from PROMIS Health Organization OR THE OWNER OF THE COPYRIGHTED MATERIALS FROM WHICH PROMIS VERSION 1.0 HAS BEEN DERIVED.

Any costs of the PROMIS network extending support to a project beyond what can be offered under its existing funding will be borne by the collaborator.  PROMIS will be cited in relevant published or presented work.

Ayala Malach-Pines Burnout Measure

Ralph Marino, MD Capabilities of Upper Extremity (CUE)

Robert Meenan, MD Arthritis Impact Measurement Scales 2 (AIMS2)

Tito Mendoza, Charles Cleeland MD Anderson Symptom Inventory

Charles M. Morin Insomnia Interview Schedule Sleep Diary

Douglas E. Moul Pittsburgh Insomnia Rating Scale

Nikolaus Netzer Berlin Questionnaire

Geraldine Padilla Quality of Life Scale – Cancer

Tonya M. Palermo, PhD Child Activity Limitations Interview (CALI)

George Parkerson, MD Duke Health Profile

Donald Patrick, PhD WHOQOL-100 US Version

Jack D. Edinger, Professional Resource Exchange Edinger's Sleep History Questionnaire

Quentin R. Regestein Hyperarousal Scale

Robin Richards, MD American Shoulder and Elbow Surgeons Shoulder Form (ASES)

Tracey Riseborough Hospital Anxiety and Depression Scale (HADS)

Kathryn Roach, PhD Shoulder Pain and Disability Index

Martin Roland, MA, MRCP Roland-Morris Low Back Pain and Disability Questionnaire

Thomas Roth Global Sleep Assessment Questionnaire   Debra Sciabarrasi Barthel Index   Cathy Sherbourne, Robert Brook, Brent Bradley Rand-36 Index of Vitality   Judith Siegel, PhD Multidimensional Anger Inventory   Ann Skinner Sickness Impact Profile (SIP)   John Spertus, MD, MPH Seattle Angina Questionnaire   Charles D. Spielberger, PhD State-Trait Anger Expression Inventory (STAXI)   Barbara Starfield, MD, MPH Child Health and Illness Profile – Adolescent Edition (CHIP-AE)   Kevin Stein Multidimensional Fatigue Symptom Inventory   Peter Tugwell, MD McMaster Toronto Arthritis   James W. Varni, PhD PedsQL™ Arthritis Module Version 3.0 Child Report (ages 8-12) PedsQL™ Asthma Module Version 3.0 Child Report (ages 8-12) PedsQL™ Cerebral Palsy Module Version 3.0 Child Report (ages 8-12) PedsQL™ Multidimensional Fatigue Scale Standard Version Child Report (ages 8-12) PedsQL™ Pediatric Quality of Life Inventory Version 4.0 Child Report ages 8-12)   John Ware, PhD PIQ-6 SF-36 v2   Terri E. Weaver Functional Outcomes of Sleep Questionnaire Wilse B. Webb Post-Sleep Inventory   Nadine Weisscher AMC Linear Disability Score (ALDS)   Nick Wetton Crown-Crisp Experiential Index   Horng-Shiuann Wu, PhD Cancer-Related Fatigue Instrument