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HealthMeasures Terms of Use

Definitions:

• HealthMeasures: a resource encompassing four measurement systems: PROMIS^®, NIH Toolbox^®, Neuro-QoL^TM, and ASCQ-Me^®
• Measurement System: a collection of health measurement instruments under one brand, such as PROMIS or NIH Toolbox
• Provider: the Department of Medical Social Sciences at Northwestern University Feinberg School of Medicine
• User: anyone who employs a HealthMeasures Measurement System or Instrument in a research, clinical, educational, or other setting
• Publicly Available: HealthMeasures Instruments which are available for download at healthmeasures.net

Thank you for your interest in HealthMeasures. Please read our Terms of Use carefully as we include information which applies universally to all of our measurement systems as well as information specific to individual measurement systems.

You understand and agree that the Provider gives access to HealthMeasures Instruments (e.g., item banks, short forms, profile measures) subject to these Terms of Use. Provider reserves the right to update the Terms of Use at any time. Changes to the Terms of Use will apply to new users, new instruments, and to new projects created by existing users after these changes are posted.

Use of HealthMeasures Measurement Systems, instruments, related materials, and services requires acceptance of all terms and conditions stated herein. You agree to abide by all of the HealthMeasures Terms of Use as a condition of using HealthMeasures. No modifications or additions to these Terms of Use are binding upon Provider unless previously agreed to in writing by an authorized representative of Provider.

User’s email may be shared with the PROMIS Health Organization, a non-profit, qualified 501(c)(3) tax-exempt organization committed to the use and dissemination of PROMIS. User’s email may be added to an email distribution list to receive scientific and promotional information about PROMIS and HealthMeasures.

Single Use, Reproducibility, and Distribution

• All HealthMeasures Instruments are copyrighted. All English and Spanish versions of PROMIS and Neuro-QoL and some NIH Toolbox self- and parent-proxy report instruments (NIH Toolbox Emotion and select Sensation) are publicly available for use without licensing or royalty fees for individual research or individual clinical use. Such use of HealthMeasures Measurement Systems and Instruments is “single use,” meaning solely for User’s research, clinical, educational, or other application.
• User shall not reproduce HealthMeasures Instruments except as needed to conduct the authorized single use research, clinical, educational, or other activity. User shall not distribute, publish, sell, license, or provide HealthMeasures products, by any means whatsoever, to third parties not involved with the authorized single use as stated above, without the prior written agreement of the Provider. Users must request permission to reprint HealthMeasures Instruments for reasons not included in the single use case.
• Commercial Users must seek permission to use, reproduce, or distribute any HealthMeasures Measurement Systems and Instruments, regardless of purpose, at all times.
• Users wishing to integrate instruments into proprietary technological systems, including in the Single Use case, must seek written approval. Proprietary technological systems include, but are not limited to, computerized adaptive tests, apps, and web portals used for data collection. Provider may incur costs in providing the permission to integrate, and those costs may be passed along to the User.
• Users who secure license agreements to deliver HealthMeasures instruments through technological systems owned and supported by Provider do not need additional licenses to use the HealthMeasures instruments provided with the technological system to which User has been granted license. If the license agreement for the technology owned and supported by Provider includes reproduction and distribution rights, the license agreement itself is sufficient permission for reproduction and distribution and covers all requirements to seek permissions or consent required herein.
• User agrees not to adapt, alter, amend, abridge, modify, condense, make derivative works, or translate HealthMeasures Instruments without prior written permission from the Provider. In cases where permission is granted, User will be expected to evaluate the impact of approved modifications.
• User agrees and undertakes not to sell or incorporate HealthMeasures Measurement Systems and Instruments into materials that could be sold without prior written consent from the Provider.
• To inquire about permissions, email help@healthmeasures.net.

Indemnification

• User agrees and undertakes to indemnify and hold Provider harmless against any and all claims, loss or damage, including fees, penalties or fines and third party claims, and attorneys’ fees arising from User’s use of any HealthMeasures Measurement System or Instrument. Further, User shall be obliged to indemnify, defend and/or hold harmless Provider and its agents, trustees, officers, medical affiliates, employees, and their respective successors, heirs, and assignees against any liability, damage, loss or expense incurred in connection with User’s use of any HealthMeasures Measurement System or Instrument.
• Consent to User’s use of HealthMeasures Measurement System or Instrument is given ‘AS IS’, without any accompanying services or improvements. Provider does not accept any liability resulting from User’s use of any HealthMeasures Measurement System or Instrument. All HealthMeasures Measurement Systems and Instruments are supplied to User with no warranties or representations of any kind as to the accuracy, currency, or the merchantability or fitness of the HealthMeasures Measurement Systems or Instruments for a particular purpose.
• Neither Provider nor any party involved in creating, producing, or delivering any HealthMeasures Measurement System or Instrument shall be liable for any damages, including without limitation, direct, incidental, consequential, indirect, or punitive damages arising out of access to, use of, alterations of, or inability to use any HealthMeasures Measurement System or Instrument, or any errors or omissions in the content thereof.

Trademarks

• User will include Provider’s trademark ownership statement on all printed copies of any HealthMeasures Measurement System or Instrument in the same form as it appears on the document that User is downloading from this website.
• User agrees and undertakes not to remove the trademark notices which appear on any printed HealthMeasures Measurement System or Instrument. Use of HealthMeasures Measurement Systems and Instruments does not and will not create any right, title or interest thereof for User, other than the right to use HealthMeasures Measurement Systems and Instruments under these Terms of Use.

Publications and Presentations

• Any publication or presentation created from research, clinical, educational, or other applicable use of any HealthMeasures Instruments should include a statement that indicates which instruments (including version number) were used and provide an appropriate citation.
• For precise copyright citation, see the measurement system of interest below.

Furthering Research

• Use of HealthMeasures Instruments in clinical research is encouraged, with the understanding that data collected from that use will contribute to knowledge about the validity of HealthMeasures measures. USERS OF HealthMeasures TOOLS ARE STRONGLY ENCOURAGED TO SUBMIT A BRIEF REPORT INCLUDING SAMPLE DEMOGRAPHIC INFORMATION, CLINICAL DATA SUFFICIENT TO characterize THE SAMPLE, AND SCORE DISTRIBUTIONS (E.G., BASELINE MEAN AND STANDARD DEVIATIONS OR CHANGE SCORES). This brief report should be submitted to help@healthmeasures.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 HealthMeasures investigators when applying these items and banks to their research.

Additional Terms and Conditions of Use for PROMIS

The PROMIS Terms and Conditions contained in this document serve as an agreement between Provider and Users of any and all aspects or components of PROMIS.

COPYRIGHT NOTICE AND CLAIMS OF COPYRIGHT INFRINGEMENT
PROMIS tests, test protocols, test items, norms, norms tables, scoring programs, scoring keys (including scoring algorithms, scale definitions, scale membership, and scoring directions), score reports, software, and other PROMIS-related materials are ©2006-2020 PROMIS Health Organization or other individuals/entities that have contributed information and materials, and are being used with the permission of the copyright holders. For a table of PROMIS copyright holders and the copyrighted information and materials employed by the copyright holders, see Appendix A in the Terms of Use PDF document.

Additional Terms and Conditions of Use for NIH Toolbox

NIH Toolbox Terms and Conditions

The NIH Toolbox Terms and Conditions contained in this document (hereinafter referred to as “NTAC”) serve as an agreement between Provider and Users of any and all aspects or components of the NIH Toolbox.

COPYRIGHT NOTICE
NIH Toolbox tests, test protocols, test items, norms, norms tables, scoring programs, scoring keys (including scoring algorithms, scale definitions, scale membership, and scoring directions), score reports, software, and other NIH Toolbox-related materials are ©2020 Northwestern University and the National Institutes of Health. Information and materials contributed to the NIH Toolbox by other individuals/entities are being used with the permission of the copyright holders.

CONFIDENTIALITY.
User acknowledges and agrees that the contents of the NIH Toolbox may constitute trade secrets, which include confidential and proprietary material, information, and procedures. User will not resell or otherwise distribute materials, or authorize or allow disclosure of the contents of a test instrument protocol, including test questions and answers, or normative data, except under the limited circumstances described in the section titled, “Maintenance of Test Security and Test Use,” or as otherwise contemplated in the published manual associated with the test. User acknowledges and agrees that the use or disclosure of trade secrets in a manner inconsistent with the provisions of this Agreement may cause Provider irreparable damage, for which remedies other than injunctive relief may be inadequate. Accordingly, User agrees that in any request by Provider to a court of competent jurisdiction for injunctive or other equitable relief seeking to restrain such use or disclosure, User will not maintain that such remedy is not appropriate under the circumstances.

PERMISSIONS AND LICENSING POLICY
Reproduction of any NIH Toolbox materials, except for authorized single use of publicly available NIH Toolbox measures, requires the prior written consent of Provider. Questions and answers, including practice questions and answers, may not be reproduced without written permission, regardless of the number of lines or items involved. Test copies may not be bound in theses or reports placed in libraries, generally circulated, or accessible to the public, or in any article or text of any kind.

PERMISSION TO USE COPYRIGHTED TEST NORMS
Provider has the sole right to authorize reproductions of any portion of their published tests, including test norms. Copying of test norms without authorization is a violation of federal copyright law. The term “copying” includes, but is not limited to, entry of NIH Toolbox test norms into a computer’s memory for purposes of test processing, scoring, or reporting. Any person or organization wanting to use NIH Toolbox test norms outside of official NIH Toolbox software must submit a written request to help@healthmeasures.net. If permission is granted, a fee may be charged. For the avoidance of doubt, permission from Provider for use of test norms does not imply endorsement of, or responsibility for, the accuracy or adequacy of any test processing, scoring, or reporting service.

MODIFICATION OF NIH TOOLBOX COMPONENTS
Provider recognizes the importance of continued scientific development of the NIH Toolbox measures to meet the needs of researchers, but emphasizes the importance of maintaining rigorous measurement standards. Therefore, User may make modifications to NIH Toolbox Cognition, Motor, Emotion and Sensation tests and test items if, and only if, the following conditions are met:

1. Specific modification plans must be enumerated and submitted in writing to Provider for approval. This request must include the specific changes to be made and the rationale for the changes. This written request must be signed by the lead researcher.
2. User may not make modifications to any component of NIH Toolbox without written consent of Provider.
3. All modifications should be fully validated against the existing NIH Toolbox measure(s) on which they were based. Plans for a concurrent validation study should be included in the written request for modifications. If no validation study is planned, this must be noted in the written request, along with an explanation.
4. User must send validation study results to Provider for review prior to publication citing any results of said study or any results citing use of NIH Toolbox.
5. Provider will review validation study data and will inform User if modification to NIH Toolbox measure(s) constitute an “Approved Adaptation” or a “Non-Validated Adaptation” of NIH Toolbox. Provider will update HealthMeasures.net accordingly to inform other users and prospective users of these modifications, along with contact information for the lead researcher.
6. User must cite NIH Toolbox in any and all presentations, publications, or other third-party sharing of research data, indicating whether any measures used constitute Approved Adaptations or Non-Validated Adaptations.
7. Provider maintains all rights to Approved Adaptations as well as Non-Validated Adaptations of NIH Toolbox tests and test items made by User. User may under no circumstances license, distribute, or share any components of NIH Toolbox with third parties, regardless of the extent of modifications, without official, written consent of PROVIDER. User is entitled to no ownership claim of intellectual property as a result of making any NIH Toolbox modifications, and is hereby enjoined from communicating or stating any such claims.

MAINTENANCE OF NIH TOOLBOX TEST SECURITY AND TEST USE

• Each person or institution using the NIH Toolbox Measures must agree to comply with these basic principles of test security.
• Test takers must not receive test answers before beginning the test. Test questions are not to be reproduced or paraphrased in any way.
• Access to test materials must be limited to qualified persons with a responsible, professional interest who agree to safeguard their use.
• Test materials and scores may be released only to persons qualified to interpret and use them properly.
• If a test taker or the parent of a child who has taken a test wishes to examine test responses or results, the parent or test taker may be permitted to review the test and the test answers in the presence of a representative of the school, college, or institution that administered the test. Such review should not be permitted in those jurisdictions where applicable laws require the institution to provide a photocopy of the test subsequent to review. If User is not certain of the effect of the laws in User’s jurisdiction, the User should contact their jurisdiction’s professional organization.

USER QUALIFICATIONS
Test users must have the appropriate knowledge, skills, training and experience to responsibly use NIH Toolbox measures. “Test users” are those persons responsible for the selection, administration, scoring and interpretation of tests and the communication of results. Provider reserves the right to ask individuals requesting access to NIH Toolbox Cognition measures to provide documentation that they have the experience and training necessary to use those measures, or are working under the supervision of someone qualified to use those measures. NIH Toolbox Cognition measures are classified as “C-Level.” C-Level tests require a high degree of expertise in test interpretation, and thus can only be requested by a User with state licensure or certification to practice in a field related to the request, or a doctorate degree in psychology, education, or a closely related field, with formal training in the ethical administration, scoring, and interpretation of clinical assessments related to the intended use of the assessment. Any users of C-Level assessments must be supervised by one or more users with C-Level qualifications, which must have been provided in advance to Provider per this process.

RULES GOVERNING USE OF THE NIH TOOLBOX BY VARIOUS CATEGORIES OF USERS
Universities, schools, organizations, businesses, clinics, and hospitals are subject to the guidelines set forth above and must have appropriately qualified individuals on staff in order to use the NIH Toolbox tests.

PROTECTIVE ORDERS. User agrees to seek a protective order safeguarding the confidentiality of test materials classified by Provider as “C-level” assessments if User is required to produce such materials in court or administrative proceedings.

NO WARRANTY. Provider makes no warranties, expressed or implied, including warranties of merchantability or fitness for a particular purpose. Provider will not, under any circumstances, be liable for User’s expense for delays, for costs of substitute materials, or for possible lost income, grants, profits, or any other special or consequential damages that may result from using the NIH Toolbox.

Additional Terms and Conditions of Use for Neuro-QoL

People using Neuro-QoL should include the following copyright notice.

COPYRIGHT NOTICE
©2008-2020 David Cella on behalf of the National Institute for Neurological Disorders and Stroke (NINDS). Some content used with permission of the PROMIS Health Organization.