1. Home
  2. Resources
  3. Publications
  4. Intellectual Property, copyright issues, and distribution of Patient-Centered Outcomes

Intellectual Property, copyright issues, and distribution of Patient-Centered Outcomes

Articles

Anfray, C., Arnold, B., Martin, M. et al. Reflection paper on copyright, patient-reported outcome instruments and their translations. Health Qual Life Outcomes 16, 224 (2018). https://doi.org/10.1186/s12955-018-1050-4

Dulac Trimoreau M. New Questionnaires Distributed by Mapi Research Trust. Patient Reported Outcomes Newsletter. Fall Issue 2012:48:16-17.

Conway K, Acquadro C. Copyright Issues on Standardized Measures. Encyclopedia of QOL Research 2012.

Anfray C, Emery MP, Conway K, Acquadro C. Letter to the Editor: Questions of Copyright. Health and Quality of Life Outcomes 2012, 10:16.

Anfray C, Dulac Trimoreau M. New Questionnaires distributed by Mapi Research Trust. Patient Reported Outcomes Newsletter. Spring Issue 2010:43:9-10.

Anfray C. Patient-reported outcomes instruments: bridging the gap between international copyright laws and common practice for developers and users-a case example. Quality of Life Research. 2009;18(10):1281–1283.

Posters

Anfray C, Méar C, Conway K, Acquadro C. The copyright of translations of PRO instruments: the case of instruments used in lung diseases. Presented at ISPOR 5th Asia Pacific-Conference, Taipei, Taiwan, September 2012.

Anfray C, Emery MP, Zarit SH. Obtaining Reliable Information about Translations of PRO Measures: the Advantages of a Central Distribution System. Presented at the 16th Annual Conference of the International Society for Quality Of Life Research (ISOQOL), New Orleans, USA, October 2009.

Anfray C, Emery MP,and Zarit SH. The Advantages of a Centralized Dissemination Strategy for Health Outcomes Instruments and Their Translations: A Case Study using the Zarit Burden Interview (ZBI). Presented at the 12th Annual European Congress of the ISPOR, Paris, France, October 2009.

Anfray C, Emery MP. Autorship and copyright issues of PRO instruments in South America. Presented at the 15th Annual Conference of the International Society for Quality Of Life Research (ISOQOL), Monteviedo, Uruguay, October 2008.

Anfray C, Emery MP. Use of Health Outcomes Questionnaires: Authorship and Copyright Issues. Examples in the Respiratory Field. Presented at the Annual Congress 2007 European Respiratory Society (ERS), Stockholm, Sweden September 2007.

Anfray C, Emery MP. Use of Patient-Reported Outcomes (PRO) Instruments: Copyright Issues. Value in Health May/June 2007;10(3):A189. Presented at the 12th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) , Arlington, May 2007.

Anfray C, Emery MP. Use of PRO instruments: licensing and copyright issues. Quality of Life Research. 2006;14:A-112. Presented at the 13th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Lisbon, October 2006.

Oral Presentations

Anfray C, Eremenco S, Patrick D, Conway K, Acquadro C. Copyright of translations of PRO measures: rules and applications. Quality of Life Research, October 2010; 19 (supp.1), p37:1669. Presented at ISOQOL 17th Annual Conference, London – United Kingdom, October 2010

Anfray C, Emery MP. Access to Health-related Quality of Life (HRQL) Instruments and their Translations in the Light of EMEA Recommendations. Presented at the 11th Annual European Meeting of the ISPOR, Athens, Greece, November 2008.

Anfray C, Emery MP. Patient-Reported Outcome (PRO) instruments: bridging the gap between international copyright laws and common practice for developers and users. Presented at the International Conference on Survey Methods in Multinational, Multiregional and Multicultural Contexts (3MC), Berlin, Germany, June 2008.

Anfray C, Emery MP. Access and Use of Patient-Reported Outcomes (PRO) instruments in international studies: authorship and copyright issues. Presented at the 14th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Toronto, Canada, October 10 2007.