PROMIS TERMS AND CONDITIONS
9/9/2010
You understand and agree that the PROMIS Health Organization and PROMIS Cooperative Group provides access to PROMIS instruments (e.g., item banks, short forms, profile measures) subject to the PROMIS Terms and Conditions (PTAC). The PROMIS Health Organization/Cooperative Group reserves the right to update the PTAC at any time. Changes in the PTAC will apply to new users, new instruments and to new projects created by existing users after these changes are posted. The most current version of the PTAC can be reviewed by clicking on the Terms of Use hypertext link located in Assessment Center.
PERSONAL AND NON-COMMERCIAL USE LIMITATION.
PROMIS instruments measuring self-reported fatigue, pain, physical function, social function, emotional distress, sleep disturbance, sleep-related impairment, and global health are available for adult and pediatric samples. Additionally, an item bank and short form for measuring impact of asthma in pediatric samples is available. 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. Adult 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. Child and youth testing in over 4,000 individuals from the United States (U.S.) general pediatric clinical 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 children in the U.S. general pediatric clinical population. The item calibrations and test statistics provided are all based upon cross-sectional data collection. PROMIS 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 tools are STRONGLY ENCOURAGED 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 brief report should be submitted to help@assessmentcenter.net 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 INSTRUMENTS SHOULD INCLUDE A STATEMENT THAT PROMIS VERSION x INSTRUMENTS WERE USED, AND REFERENCE THe PROMIS SITE ( www.nihpromis.org ) FOR FURTHER INFORMATION.
Permission to use PROMIS INSTRUMENTS 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 BE REQUESTED from THE PROMIS Health Organization OR THE OWNER OF THE COPYRIGHTED MATERIALS FROM WHICH PROMIS HAS BEEN DERIVED.
COPYRIGHT NOTICE AND CLAIMS OF COPYRIGHT INFRINGEMENT.
Information and materials contained herein are ©2010 PROMIS Health Organization or other individuals/entities that have contributed information and materials to Assessment Center, and are being used with the permission of the copyright holders.
The table set forth below identifies individuals and entities who have contributed items in support of building PROMIS item banks and the copyrighted information and materials employed by such persons. As a user of PROMIS you are entirely responsible for respecting the proprietary rights of such persons, and for complying strictly with the requirements set forth herein. If you have questions about these requirements and your legal obligations, you may wish to consult an attorney.
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Thomas M. Achenbach, PhD Child Behavior Checklist for Youth |
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Torbjörn Åkerstedt Karolinska Sleep Diary |
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Stanley E. Althof Center for Marital and Sexual Health Sexual Functioning Questionnaire |
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Julie Barroso, PhD HIV-Related Fatigue Scale |
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Dorcas Beaton Disabilities of the Arm, Shoulder and Hand (DASH) |
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Basia Belza Multidimensional Assessment of Fatigue |
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Jill Binkley, PT Lower Extremity Functional Scale |
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Thomas Borkovec Penn State Worry Questionnaire |
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Bengt Brorsson Swedish Health Related Quality of Life Survey |
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Richard Brown, PhD Parkinson Fatigue Scale |
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Elly Budiman-Mak, MD Foot Function Scale |
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Arnold Buss Buss-Durkee Hostility Inventory |
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Daniel J. Buysse Pittsburgh Sleep Quality Index |
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Andrei Calin, MD Bath Ankylosing Spondylitis Function Index (BASFI) |
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David Cella, PhD Functional Assessment of Chronic Illness Therapy (FACIT) Center on Outcomes, Research, and Education Item Banks |
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Larry Chambers, PhD McMaster Health Index Questionnaire |
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Trudie Chadler 14-Item fatigue scale |
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Kimberly A. Cote Brock Sleep and Insomnia Questionnaire |
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Laura Creti Sexual History Form |
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Peter Dent, MD Juvenile Arthritis Self-Report Index (JASI) |
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George Domino Assessment of Sleep Sleep Questionnaire |
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Maxime Dougados, MD Dougados Functional Index (DFI) |
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Alan B. Douglass Sleep Disorders Questionnaire |
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M Tuncay Duruoz, MD Duruoz Hand Index |
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Colin A. Espie Beliefs and Attitudes about Sleep Scale Dysfunctional Beliefs and Attitudes about Sleep Scale - 10 Glasgow Content of Thoughts Inventory Insomnia Impact Scale Sleep Disturbance Questionnaire |
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Catherine S. Fichten Sleep Diary Sleep Questionnaire |
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Robert Ficke Performance Outcomes Measures Project |
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J.D. Fisk Fatigue Impact Scale |
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James F Fries, MD Health Assessment Questionnaire (HAQ) |
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Johanna CJM de Haes, PhD Rotterdam Symptom Checklist |
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Stephen Haley, PhD Late Life Function and Disability Instrument: Function Component |
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Danete Hann, PhD and Paul Jacobsen, PhD Fatigue Symptom Inventory |
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Philip S Helliwell, MD, PhD Revised Leeds Disability Questionnaire |
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Ian Hindmarch Quality of Life of Insomniacs Leeds Sleep Evaluation Questionnaire (LESQ) |
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Mark Hlatky, MD Duke Activity Status Index (DASI) |
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Timothy J. Hoelscher Insomnia Impact Scale |
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E. Scott Huebner, PhD Multidimensional Students' Life Satisfaction Scale (MSLSS) |
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Jeffrey G. Johnson, PhD Patient Health Questionnaire for Adolescents (PHQ-A) |
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Lauren Krupp Fatigue Severity Scale Sleep Symptom Questionnaire |
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Jin-Shei Lai, PhD Pediatric Fatigue Item Bank |
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Kathryn A. Lee Numerical Rating Scale for Fatigue |
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Debra Lerner, PhD Work Limitations Questionnaire |
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Kenneth Lichstein Sleep Questionnaire |
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Mark S. Litwin UCLA Prostate Cancer Index |
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Daniel Lovell, MD Juvenile Arthritis Functional Assessment Scale Juvenile Arthritis Functional Assessment Report for Children (JAFAR-C) |
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Ayala Malach-Pines Burnout Measure |
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Ralph Marino, MD Capabilities of Upper Extremity (CUE) |
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Robert Meenan, MD Arthritis Impact Measurement Scales 2 (AIMS2) |
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Tito Mendoza, Charles Cleeland MD Anderson Symptom Inventory |
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Charles M. Morin Insomnia Interview Schedule Sleep Diary |
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Douglas E. Moul Pittsburgh Insomnia Rating Scale |
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Nikolaus Netzer Berlin Questionnaire |
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Geraldine Padilla Quality of Life Scale - Cancer |
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Tonya M. Palermo, PhD Child Activity Limitations Interview (CALI) |
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George Parkerson, MD Duke Health Profile |
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Donald Patrick, PhD WHOQOL-100 US Version |
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Arnold L. Potosky Prostate Cancer Outcomes Study |
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Jack D. Edinger, Professional Resource Exchange Edinger's Sleep History Questionnaire |
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Quentin R. Regestein Hyperarousal Scale |
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Robin Richards, MD American Shoulder and Elbow Surgeons Shoulder Form (ASES) |
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Tracey Riseborough Hospital Anxiety and Depression Scale (HADS) |
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Kathryn Roach, PhD Shoulder Pain and Disability Index |
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Martin Roland, MA, MRCP Roland-Morris Low Back Pain and Disability Questionnaire |
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Raymond Rosen and Jules Mitchell Brief Index of Sexual Functioning for Women Female Sexual Function Index |
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Thomas Roth Global Sleep Assessment Questionnaire |
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Debra Sciabarrasi Barthel Index |
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Cathy Sherbourne, Robert Brook, Brent Bradley Rand-36 Index of Vitality |
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Judith Siegel, PhD Multidimensional Anger Inventory |
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Ann Skinner Sickness Impact Profile (SIP) |
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John Spertus, MD, MPH Seattle Angina Questionnaire |
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Charles D. Spielberger, PhD State-Trait Anger Expression Inventory (STAXI) |
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Barbara Starfield, MD, MPH Child Health and Illness Profile - Adolescent Edition (CHIP-AE) |
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Kevin Stein Multidimensional Fatigue Symptom Inventory |
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K.L. Syrjala Sexual Function Questionnaire |
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Peter Tugwell, MD McMaster Toronto Arthritis |
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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) |
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John Ware, PhD PIQ-6 SF-36 v2 Medical Outcomes Study Sexual Functioning Scale |
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Terri E. Weaver Functional Outcomes of Sleep Questionnaire |
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Wilse B. Webb Post-Sleep Inventory |
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Nadine Weisscher AMC Linear Disability Score (ALDS) |
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Nick Wetton Crown-Crisp Experiential Index |
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Horng-Shiuann Wu, PhD Cancer-Related Fatigue Instrument |