Patient-reported outcomes instruments: bridging the gap between international copyright laws and common practice for developers and users—a case example
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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.
KeywordsPatient-reported outcomes Questionnaires Asthma AQLQ(S) Copyright
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- 2.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.
- 3.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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