Literature DB >> 19911308

Patient-reported outcomes instruments: bridging the gap between international copyright laws and common practice for developers and users--a case example.

Caroline Anfray1.   

Abstract

Copyright laws are intended to protect the rights of authors in their literary, scientific, and artistic works. The recent controversy about the standardized version of the Asthma Quality of Life Questionnaire between Elizabeth Juniper and Eirini Grammatopoulou et al. is an example of the difficulties inherent to copyright faced by developers and users of patient-reported outcome (PRO) instruments. This brief communication presents the basics of international copyright laws (i.e., the Berne Convention), the facts behind the controversy, and our analysis of the case based on our experience as a distributing center of PRO instruments. We conclude that better communication between developers and users would prevent most unfortunate complications and misunderstandings.

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Year:  2009        PMID: 19911308     DOI: 10.1007/s11136-009-9552-5

Source DB:  PubMed          Journal:  Qual Life Res        ISSN: 0962-9343            Impact factor:   4.147


  5 in total

1.  Evaluation of impairment of health related quality of life in asthma: development of a questionnaire for use in clinical trials.

Authors:  E F Juniper; G H Guyatt; R S Epstein; P J Ferrie; R Jaeschke; T K Hiller
Journal:  Thorax       Date:  1992-02       Impact factor: 9.139

2.  An 18-item standardized Asthma Quality of Life Questionnaire-AQLQ(S).

Authors:  Eirini Grammatopoulou; Emmanouil Skordilis; Dimitra Koutsouki; George Baltopoulos
Journal:  Qual Life Res       Date:  2007-12-14       Impact factor: 4.147

3.  Modification, translation and adaptation of questionnaires: should copyright laws be observed?

Authors:  Elizabeth F Juniper
Journal:  Qual Life Res       Date:  2009-02-03       Impact factor: 4.147

4.  Validation of a standardized version of the Asthma Quality of Life Questionnaire.

Authors:  E F Juniper; A S Buist; F M Cox; P J Ferrie; D R King
Journal:  Chest       Date:  1999-05       Impact factor: 9.410

5.  Development and validation of the Mini Asthma Quality of Life Questionnaire.

Authors:  E F Juniper; G H Guyatt; F M Cox; P J Ferrie; D R King
Journal:  Eur Respir J       Date:  1999-07       Impact factor: 16.671

  5 in total
  2 in total

1.  Questions of copyright.

Authors:  Caroline Anfray; Marie-Pierre Emery; Katrin Conway; Catherine Acquadro
Journal:  Health Qual Life Outcomes       Date:  2012-01-31       Impact factor: 3.186

2.  Reflection paper on copyright, patient-reported outcome instruments and their translations.

Authors:  Caroline Anfray; Benjamin Arnold; Mona Martin; Sonya Eremenco; Donald L Patrick; Katrin Conway; Catherine Acquadro
Journal:  Health Qual Life Outcomes       Date:  2018-12-05       Impact factor: 3.186

  2 in total

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