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Copyright Statement and User's Agreement

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.

The table set forth below identifies individuals and entities who have contributed items in support of building item banks and the copyrighted information and materials employed by such persons. As a user of the Assessment Center 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 should consult an attorney.

Thomas M. Achenbach, PhD

Child Behavior Checklist for Youth

 

Torbjörn Åkerstedt

Karolinska Sleep Diary

 

Julie Barroso, PhD

HIV-Related Fatigue Scale

 

Dorcas Beaton

Disabilities of the Arm, Shoulder and Hand (DASH)

 

Basia Belza

Multidimensional Assessment of Fatigue

 

Jill Binkley, PT

Lower Extremity Functional Scale

 

Thomas Borkovec

Penn State Worry Questionnaire

 

Bengt Brorsson

Swedish Health Related Quality of Life Survey

 

Richard Brown, PhD

Parkinson Fatigue Scale

 

Elly Budiman-Mak, MD

Foot Function Scale

 

Arnold Buss

Buss-Durkee Hostility Inventory

 

Daniel J. Buysse

Pittsburgh Sleep Quality Index

 

Andrei Calin, MD

Bath Ankylosing Spondylitis Function Index (BASFI)

 

David Cella, PhD

Functional Assessment of Chronic Illness Therapy (FACIT)

Center on Outcomes, Research, and Education Item Banks

 

Larry Chambers, PhD

McMaster Health Index Questionnaire

 

Trudie Chadler

14-Item fatigue scale

 

Kimberly A. Cote

Brock Sleep and Insomnia Questionnaire

 

Peter Dent, MD

Juvenile Arthritis Self-Report Index (JASI)

 

George Domino

Assessment of Sleep

Sleep Questionnaire

 

Maxime Dougados, MD

Dougados Functional Index (DFI)

 

Alan B. Douglass

Sleep Disorders Questionnaire

 

M Tuncay Duruoz, MD

Duruoz Hand Index

 

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

 

Catherine S. Fichten

Sleep Diary

Sleep Questionnaire

 

Robert Ficke

Performance Outcomes Measures Project

 

J.D. Fisk

Fatigue Impact Scale

 

James F Fries, MD

Health Assessment Questionnaire (HAQ)

 

Johanna CJM de Haes, PhD

Rotterdam Symptom Checklist

 

Stephen Haley, PhD

Late Life Function and Disability Instrument: Function Component

 

Danete Hann, PhD and Paul Jacobsen, PhD

Fatigue Symptom Inventory

 

Philip S Helliwell, MD, PhD

Revised Leeds Disability Questionnaire

 

Ian Hindmarch

Quality of Life of Insomniacs

Leeds Sleep Evaluation Questionnaire (LESQ)

 

 

Mark Hlatky, MD

Duke Activity Status Index (DASI)

 

Timothy J. Hoelscher

Insomnia Impact Scale

 

E. Scott Huebner, PhD

Multidimensional Students’ Life Satisfaction Scale (MSLSS)

 

Jeffrey G. Johnson, PhD

Patient Health Questionnaire for Adolescents (PHQ-A)

 

Lauren Krupp

Fatigue Severity Scale

Sleep Symptom Questionnaire

 

Jin-Shei Lai, PhD

Pediatric Fatigue Item Bank

 

Kathryn A. Lee

Numerical Rating Scale for Fatigue

 

Debra Lerner, PhD

Work Limitations Questionnaire

 

Kenneth Lichstein

Sleep Questionnaire

 

Daniel Lovell, MD

Juvenile Arthritis Functional Assessment Scale

Juvenile Arthritis Functional  Assessment Report for Children (JAFAR-C)

 

 

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

 

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