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Gepubliceerd in:

01-12-2009 | Commentary

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

Auteur: Caroline Anfray

Gepubliceerd in: Quality of Life Research | Uitgave 10/2009

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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.
Voetnoten
1
Bold and underlined font are added by the author of this letter.
 
Literatuur
2.
go back to reference 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. 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.
go back to reference 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. 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.
4.
go back to reference Juniper, E. F. (2009). Modification, translation and adaptation of questionnaires. Should copyright laws be observed? Quality of Life Research, 18(5), 531–533.CrossRefPubMed Juniper, E. F. (2009). Modification, translation and adaptation of questionnaires. Should copyright laws be observed? Quality of Life Research, 18(5), 531–533.CrossRefPubMed
5.
go back to reference Grammatopoulou, E., Skordilis, E., Koutsouki, D., & Baltopoulos, G. (2009). An 18-item AQLQ(S) model: A reply to Juniper. Quality of Life Research, 18(5), 535–539.CrossRef Grammatopoulou, E., Skordilis, E., Koutsouki, D., & Baltopoulos, G. (2009). An 18-item AQLQ(S) model: A reply to Juniper. Quality of Life Research, 18(5), 535–539.CrossRef
6.
go back to reference Juniper, E. F., Guyatt, G. H., Epstein, R. S., Ferrie, P. J., Jaeschke, R., & Hiller, T. K. (1992). Evaluation of impairment of health-related quality of life in asthma: Development of a questionnaire for use in clinical trials. Thorax, 47(2), 76–83.CrossRefPubMed Juniper, E. F., Guyatt, G. H., Epstein, R. S., Ferrie, P. J., Jaeschke, R., & Hiller, T. K. (1992). Evaluation of impairment of health-related quality of life in asthma: Development of a questionnaire for use in clinical trials. Thorax, 47(2), 76–83.CrossRefPubMed
7.
go back to reference Juniper, E. F., Buist, A. S., Cox, F. M., Ferrie, P. J., & King, D. R. (1999). Validation of a standardized version of the asthma quality of life questionnaire. Chest, 115(5), 1265–1270.CrossRefPubMed Juniper, E. F., Buist, A. S., Cox, F. M., Ferrie, P. J., & King, D. R. (1999). Validation of a standardized version of the asthma quality of life questionnaire. Chest, 115(5), 1265–1270.CrossRefPubMed
8.
go back to reference Juniper, E. F., Guyatt, G. H., Cox, F. M., Ferrie, P. J., & King, D. R. (1999). Development and validation of the mini asthma quality of life questionnaire. The European Respiratory Journal, 14(1), 32–38.CrossRefPubMed Juniper, E. F., Guyatt, G. H., Cox, F. M., Ferrie, P. J., & King, D. R. (1999). Development and validation of the mini asthma quality of life questionnaire. The European Respiratory Journal, 14(1), 32–38.CrossRefPubMed
9.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
Metagegevens
Titel
Patient-reported outcomes instruments: bridging the gap between international copyright laws and common practice for developers and users—a case example
Auteur
Caroline Anfray
Publicatiedatum
01-12-2009
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 10/2009
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-009-9552-5