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Quality of Life Research

, 18:1281 | Cite as

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

  • Caroline Anfray
Commentary

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.

Keywords

Patient-reported outcomes Questionnaires Asthma AQLQ(S) Copyright 

References

  1. 1.
    Berne Convention for the Protection of Literary and Artistic Works. (1886). Resource document. World Intellectual Property Organization. http://www.wipo.int/treaties/en/ip/berne/trtdocs_wo001.html. Accessed 25 June 2009.
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    Anfray, C., & Emery, M. P. (2006) Use of PRO instruments: Licensing and copyright issues. 2006 International Society for Quality of Life Research meeting abstracts [www.isoqol.org/2006mtgabstracts.pdf]. Quality of Life Research supplement, A-112, Abstract #1658.
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    Anfray, C., Emery, M. P. (2007). Patient-reported outcome (PRO) instruments: Bridging the gap between international copyright laws and common practice for developers and users. 2007 International Society for Quality of Life Research meeting abstracts [www.isoqol.org/2007mtgabstracts.pdf]. Quality of Life Research supplement, A-21, Abstract #1222.
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    Grammatopoulou, E., Skordilis, E., Koutsouki, D., & Baltopoulos, G. (2008). An 18-item standardised asthma quality of life questionnaire—AQLQ(S). Quality of Life Research, 17(2), 323–332.CrossRefPubMedGoogle Scholar
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    Berne Convention Contracting Parties (2009). Resource document. World Intellectual Property Organization. http://www.wipo.int/treaties/en/ShowResults.jsp?lang=en&treaty_id=15. Accessed 10 August 2009.

Copyright information

© Springer Science+Business Media B.V. 2009

Authors and Affiliations

  1. 1.MAPI Research TrustLyonFrance

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