Mapi Research Trust provides reliable, comprehensive and up-to-date information services to research scientists, pharmaceutical companies, and governmental health agencies involved in the field of Patient-Centered Outcomes worldwide.

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Cochrane HRQoL Methods Group


Development projects

Education

ERIQA/PRO Harmonization Group

IQOD

Literature reviews

PROQOLID

PROLabels

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







Cochrane HRQoL Methods Group

Articles

carre6 Patrick D, Guyatt G, Petkova I. The Patient-Reported Outcomes Methods Group of the Cochrane Collaboration: an Update. Patient Reported Outcomes Newsletter. Spring Issue 2012; 47, p30.

carre6 Patrick D, Guyatt G, Petkova I. The Patient Reported Outcomes Methods Group of the Cochrane Collaboration. Patient Reported Outcomes Newsletter. Fall Issue 2011; 46, p31.

carre6 Patrick D, Guyatt G, Petkova I. The Patient Reported Outcomes Methods Group of the Cochrane Collaboration: an Update. Patient Reported Outcomes Newsletter. Spring Issue 2011; 45, p10.

carre6 Staniek V. Cochrane health-related quality of life methods group (HRQoL MG): toward registration. Quality of Life Newsletter. 2001; 26(Jan-Jun), p1-2

carre6 Joyce CRB, Acquadro C, Haugh M. A proposed Cochrane Health-Related Quality of Life Methods Working Group (QOL MWG). Quality of Life Newsletter. 1998; 20(Sep-Dec), p3.


 

Development Projects

Articles

carre6 Aquadro C, Konway C, Wolf B, Anfray C, Hareendran A, Mear I, Nadjar A. Development of a standardized classification system for the translations of Patient-Reported Outcome (PRO) measures. Quality of Life Newsletter. 2008; 39, p5.

carre6 Carbonnel H, Longin J, Lobo-Luppi L. Acquadro C. Use of Patient-Reported Outcomes in Gene Therapy Clinical Trials. Quality of Life Newsletter. 2003; 30, p20-22

carre6 Manificat S, Dazord A, Mechoud J, Rodrigues C, Bouttier M, Conway K. School integration for disabled children: a quality of life study. Quality of Life Newsletter. 2002; 28(January-August), p16

carre6 Manificat S, Dazord A, Langue L, Danjou G, Escoffier Ch, Gerbay A, Dudognon P, Morin I, Milongo L, Payot F, Raiz AM, Simon-Ghedriri MJ, Stagnara J. Impact du mode d'allaitement du nourrisson sur la qualité de Vie de la mère et la qualité de vie de l'enfant: résultats d'une étude pilote. Le Pédiatre. 2000;Tome XXXVI (1), p17-23.

carre6 Manificat S, Dazord A, Langue J, Danjou G, Bauche P, Bovet F, Cubell JM, Luchelli R, Tockert E, Conway K. A new intrument to evaluate infant quality of life. Quality of Newsletter. 1999; 23(Sept-Dec), p7-8.

carre6 Spertus J, Patrick Green C, Conway K, Uzun V. Creating a New Disease-Specific Health Measure for Congestive Heart Failure: a Prototype for Instrument Development in the Current Era. Quality of Life Newsletter. 1998; 20(Sept-Dec), p9-10.

Workshops

carre6 Conway K, Manificat S. Dazord A. Infant QoL: a new instrument. Presented at the 6th Annual Symposium of Contributed Papers on QoL Evaluation, Drug Information Association, Hilton Head - USA, March 1999.

Oral presentations

carre6 Manificat S, Dazord A, Conway K, Chevallet L, Emery MP, Langue L, Danjou G. Infant Quality of Life: a new instrument. Presented at the 6th annual symposium of contributed papers on QoL evaluation, Drug Information Association, Hilton Head - USA, March 1999.

Posters

carre6 Mouchet J, Emery MP, Maier W. Development of a Post-Marketing Requirements (PMR) Database. Presented at the ISPOR 15th Annual European Congress, Berlin, Germany, November 2012.

carre6 Mouchet J, Albrieux M, Maier W. Development of a regulatory post-marketing studies database. Presented at the ISPOR 17th Annual International Meeting, Washington DC, USA, June 2012.

carre6 Caron M, Mouchet J, Emery MP, Longin J, Maier W. Development of a regulatory post-marketing studies database. Presented at the International Conference on Pharmacoepidemiology & Therapeutic Risk Management, Rhode Island - USA, August 2009.

carre6 Caron M, Mouchet J, Emery MP, Longin J, Maier W. Development of a regulatory post-marketing studies database. Presented at the 14th Annual International Meeting of the ISPOR, Orlando - USA, May 2009.

carre6 Conway K, Mear I. Rationale for the Development of a Classification System for the Translations of PRO Instruments. Presented at the 15th Annual Conference of the International Society for Quality Of Life Research (ISOQOL), Montevideo - Uruguay, October 2008.

carre6 Aquadro C, Konway C, Wolf B, Anfray C, Hareendran A, Mear I, Nadjar A. Development of a standardized classification system for the translations of Patient-Reported Outcome (PRO) measures. Presented at the 13th Annual International Meeting (ISPOR), Toronto - Ontario, Canada, May 3-7, 2008.

carre6 Duracinsky M, Cervoni J, Vincent V, LAscoux C, Bourgarit A, Acquadro C, Conway K, Wu, A, Chassany O. Validation d'un questionnaire de qualité de vie spécifique de la lipodystrophie liée à la pathologie VIH. La Revue de Médecine Interne, 2004; 25(Supp 1), p189.

carre6 Girod I, Keininger DL, de la Loge C, Hunter M. Presentation of the 23-item Women's Health Questionnaire (WHQ): scoring and interpretation issues. Value in Health. 2000; 3(5), p341-342. Presented at the 3 rd Annual European Meeting, International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Antwerp - Belgium, November 2000.

carre6 Girod I, Keininger DL, de la Loge C, Hunter M. Methodological issues in evaluating conceptual equivalence: applications of the Women's Health Questionnaire. Value in Health. 2000; 3(5), p342. Presented at the 3rd Annual European Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Antwerp - Belgium, November 2000.

carre6 Girod I, Keininger DL, de la Loge C, Hunter M. Presentation of the 23-item Women's Health Questionnaire (WHQ): scoring and interpretation issues. Quality of Life Research. 2000; 9(3), p25. Presented at the 7th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Vancouver - Canada, October 2000.

carre6 Girod I, Keininger DL, de la Loge C, Hunter M. Methodological issues in evaluating conceptual equivalence: applications of the Women's Health Questionnaire. Quality of Life Research. 2000; 9(3), p25. Presented at the 7th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Vancouver - Canada, October 2000.

carre6 Girod I, Keininger DL; de la Loge C, Hunter M. Development of a new scoring of the Women's Health Questionnaire (WHQ). Value in Health. 2000; 3(2), p103. Presented at the 5th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Crystal City - USA, May 2000.

carre6 Girod I, Adesina A, Keininger DL, , Wool C, Marquis P. Implications of menopausal symptoms on quality of life. Value in Health. 1999; 2(3), p209. Presented at the 4th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Crystal City - USA, May 1999.

carre6 Keininger DL, Abetz L, Girod I, Adesina A, Dubois D, Wool C, Marquis P. Comparison of Quality of Life between Menopausal women and age-matched peers. Value in Health. 1999; 2(3), p210. Presented at the 4th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Crystal City - USA, May 1999.


 

Education

Articles


carre6 Vicari M. Education in Health-Related Quality of Life. A report on Mapi Research Institute Educational Programmes 2000. Quality of Life Newsletter. 2001; 26(Jan-Jun), p9.

Poster

carre6 Acquadro C, Lobo-Luppi L, Chassany O. Training regulatory agencies in PRO evaluation: the Workmats experience. Presented at the 9th Annual International Meeting of the ISPOR, Arlington - USA, May 2004.


 

ERIQA/PRO Harmonization Group

Articles


carre6 Regnault A, Acquadro C. FDA Workshop Measurement in Clinical Trials: Review and Qualification of Clinical Outcome. Patient Reported Outcomes Newsletter. Spring Issue 2012; 47, pp.12-17.

carre6 Acquadro C., Berzon R., Dubois D., Nancy Kline L., Marquis P., Revicki D., and Rothman M. Incorporating the Patient's Perspective into Drug Development and Communication: An Ad Hoc Task Force Report of the Patient-Reported Outcomes (PRO) Harmonization Group Meeting at the Food and Drug Administration, February 16, 2001. Value in Health. 2003; 6(5):522-531.

carre6 Wiklund I, Acquadro C, Chassany O. Patient-Reported Outcomes in a regulatory environment, there is a need for guidance. In Qualité de vie liée à l'état de santé: critère d'évaluation. Edited by Chassany O, Caulin C. Collection Recherche clinique & Décision Thérapeutique. Springer, Paris © 2002:63-69.

carre6 Conway K, Mear I, Acquadro C for the ERIQA Group. An attempt to develop minimal requirements for the 1 st step of cross-cultural adapation of patient reported outcomes (PROs) measures. Quality of Life Newsletter. 2001:27(July-Dec):6

carre6 Acquadro C for the PRO Harmonization Group. Important issues in patient reported outcomes (PROs) Research. A brief report of the activities of the PRO harmonization group. Quality of Life Newsletter. 2001:27(July-Dec):8

carre6 Acquadro C for the ERIQA Group. A decisive step towards the recognition of patient reported outcomes in clinical trials. Quality of Life Newsletter. 2001:26 (Jan-Jun):24-25

carre6 Acquadro C for the ERIQA Group. The European Regulatory Issues on Health-Related Quality of Life Assessment (ERIQA) Project: Preliminary Results and Plans for the future. Quality of Newsletter. 2000:24(Jan-Jun):1-3.

carre6 ERIQA Group. The European Regulatory Issues on QoL Assessment (ERIQA) project. Quality of Newsletter. 1999:21(Jan-Apr):1-2.

Workshops

carre6 Acquadro C for the ERIQA Group. The European Regulatory Issues on quality of Life Assessment (ERIQA) project. Plenary session at the 7 th annual symposium of contributed papers on QoL Evaluation, Hilton Head, USA, April 2000

carre6 Acquadro C for the ERIQA Group. The European Regulatory Issues on Quality of Life Assessment (ERIQA) project. ISPOR Health Policy Session at the 5th annual international meeting, International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Crystal City, USA, May 2000.

Oral Presentations

carre6 Acquadro C. for the ERIQA Group. EMEA/ERIQA Guidelines for Translation and Cultural adaptation. Presented at the 6 th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research, Barcelona, Spain, November 2003 during the Quality of Life Special Interest Group form “Translation and Cultural Adaptation: is it time for a harmonized approach to Linguistic Validation?”

carre6 Acquadro C, Staniek V for the ERIQA Group. The European Regulatory Issues on Quality of Life Assessment (ERIQA) Project. Presented at the Pan Pacific Conference of ISOQOL . Tokyo, Japan, April 2001.

carre6 Staniek V, Acquadro Cfor the ERIQA. Role of Health-Related Quality of Life (HRQL) outcomes in the European Drug Regulatory Process: A review of the EMEA documents. Taking the QoL research into the new millenium. Presented at the Pan Pacific Conference of ISOQOL. Tokyo, Japan, April 2001.

carre6 Acquadro C for the ERIQA Group. The European Regulatory Issues on quality of Life Assessment (ERIQA) project. Presented at the Health Outcomes Conference, Canberra, Australia, July 1999.

Posters

carre6 Lobo-Luppi L, Acquadro C. Pre-selection of EMEA efficacy working party guidance for review and comments. Quality of Life Research. 2002;11(7):685. Presented at the 9 th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Orlando, USA, November 2002.

carre6 Acquadro C for the ERIQA Group. A decisive step towards the recognition of patient reported outcomes in clinical trials: report of a meeting at the FDA on February 16, 2001. Quality of Life Research. 2001;10(3):270. Presented at the 8th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Amsterdam, The Netherlands, November 2001.

carre6 Acquadro C, Staniek V for the ERIQA Group. Role of Health-Related Quality of Life (HRQL) outcomes in the European Drug Regulatory Process: A review of the EMEA documents. Value in Health. 2001;4(2):177. Presented at the 6 th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Arlington, VA, USA, May 2001.

carre6 Acquadro C, Marquis P for the ERIQA Group. Results of the spring 2000 HRQL harmonization meeting. Submitted for publication in Quality of Life Research. Quality of Life Research. 2000;9(3):27. Presented at the 7th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Vancouver, Canada, October 2000.

carre6 Acquadro C for the ERIQA Group. Role of HRQL evaluation in the drug regulatory process: preliminary results from a European Regulatory survey. Value in Health. 2000;3(2):164. Presented at the 5th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Crystal City, USA, May 2000.

carre6 Marquis P, Abetz L, Acquadro C for the ERIQA Group. Health-Related Quality of Life and Regulatory issues: comparison of US and European initiatives. Value in Health. 2000;3(2):165. Presented at the 5th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Crystal City, USA, May 2000.

carre6 Chassany O, Fullerton S, Wiklund I, Apolone G, Acquadro C, Jambon B for the ERIQA Group. Minimal standards for the validation of quality of life instruments used in clinical trials. Value in Health. 2000;3(2):219. Presented at the 5th Annual International Meeting, International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Crystal City, USA, May 2000.

carre6 Acquadro C. The European regulatory issues on quality of life assessment (ERIQA) project. Quality of Life Research. 1999;8(7):658. Presented at the 6 th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Barcelona, Spain, November 1999.

carre6 Wiklund I, Apolone G, Acquadro C, Chassany O, Jabmon B, Fullerton S. A comparison of the EMEA and FDA draft guidelines in congestive heart failure (CHF) with particular reference to Health-Research quality of life (HRQL) outcomes. Quality of Life Research. 1999;8(7):658. Presented at the 6 th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Barcelona, Spain, November 1999.

carre6 Apolone G, Brunetti M, De Carli G, Acquadro C. A review and evaluation of the EMEA documents with reference to QoL assessment. Quality of Life Research. 1999;8(7):657. Presented at the 6 th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Barcelona, Spain, November 1999.


 

IQOD

Articles


carre6 Mouly M, Lobo-Luppi L, for The IQOD Working Group. IQOD instruction manuals and database’s, for a better use of PRO questionnaires - WHQ, PGWBI, MLHF. Quality of Life Newsletter. 2003; 30:17.

carre6 Mouly M, Lobo-Luppi L for the IQOD Group. International Health-related Quality of Life Outcomes Database (IQOD) Programme. Phase I – Progress report. Cross-cultural reference values for PRO: WHQ achieved, PGWBI and MLHF in progress. Quality of Life Newsletter. 2002;29(fall issue):12.

carre6 Mouly M, for the IQOD Working Group. IQOD Programme phase I: international health-related quality of life outcomes database improving the quality of life through research. Quality of Life Newsletter. 2001: 27 (July-Dec): 15-16.

carre6 Keininger DL. Why develop IQOD? International Health-Related Quality of Life Outcomes Database (IQOD). Quality of Newsletter. 1999:23(Sept-Dec):2.

carre6 Keininger DL. International Health-Related Quality of Life Outcomes Database (IQOD). Quality of Newsletter. 1999:21(Jan-Apr):9.

Oral presentations

carre6 Lobo Luppi L, Emery MP, Fayol-Paget C. Databases as instrument banks: WHQ, PGWBI and MLHF questionnaires - The International Health-Related Quality of Life Outcomes Database (IQOD) Programme. Presented at the ISOQOL Annual Conference, October 2004, Hong Kong.

carre6 Keininger DL. International Health-related Quality of Life Outcomes Database (IQOD) Project. Presented at the Drug Information Association International Conference, San Diego, California, June 2000.

carre6 Keininger DL.The Mapi Research Health Institute Health-related Quality of Life Outcomes Database (IQOD) Program. Presented at the International Society for Pharmacoeconomics and Outcome Research, Edinburg, Scotland, November 1999 .

carre6 Keininger DL, Conway K, Acquadro C, Marquis P, Jambon B. Mapi Research Institute Health-Related Quality of Life Outcomes Database (IQOD) project. Presented at the Health Outcomes Conference, Canberra, Australia, July 1999.

Posters

carre6 Lobo Luppi L, Conway K, Mear I, Martin M, Ware J, for the IQOD Working Group. Benefits of Translatability Assessment to enhance the coherence of data in international studies – The IQOD Experience - Presented at the ISPOR 6 th Annual European Congress, Barcelona, Spain, November 2003.

carre6 Mouly M., Fayol-Paget C., Lobo-Luppi L., for the IQOD Group. Databases and instruction manuals: valuable tools to better learn about the WHQ, PGWBI and MLHF questionnaires – the International Health-Related Quality of Life Outcomes database (IQOD) programme. Value in Health. 2003;6(3):302. Presented at the 8th International Meeting of the ISPOR, Arlington, USA, May 2003.

carre6 Lobo-Luppi L, Mouly M for the IQOD Group. The International HRQL outcomes database (IQOD) programme – WHQ & PGWBI databases: references for cross-cultural comparisons. Value in Health. 2002;5(6):535. Presented at the 5th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research , Rotterdam, The Netherlands, November 2002.

carre6 Dubois D, Mouly M, Lobo-Luppi L for the IQOD Group. The International HRQL outcomes database (IQOD) programme – Progress report on cross-cultural equivalence of patient reported outcomes. Quality of Life Research. 2002;11(7):686. Presented at the 9 th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Orlando, USA, November 2002.

carre6 O Garin, M Ferrer, E Van Ganse, G Petri, I Wiklund, M Mouly, B Romera, J Alonso. Revision systematica de cuestionarios especificos de calidad de vida en insuficiencia cardiaca. XX Reunión Científica de la Sociedad Española de Epidemiología, Barcelona, Spain, September 2002.

carre6 Pietri G, Wiklund I, Ferrer M, Garin O, Lobo-Luppi L, Mouly M, Alonso J, Van Ganse E., for the IQOD Working Group. The IQOD Programme: Phase 1: Validation methodology for the Minnesota Living with Heart-Failure Questionnaire. Presented at the International Congress of Pharmacoepidemiology, Edinburgh, Scotland August 2002.

carre6 Keininger D, Lobo-Luppi L, Mouly M. The IQOD programme: Phase 1. Presented at the 9th Annual Symposium for Quality of Life Evaluation (DIA), Hilton Head, USA, March 2002.

carre6 Keininger DL, Conway K, Acquadro C, Marquis P, Jambon B. Mapi Research Institute health-related quality of life database (IQOD) project. Quality of Life Research. 1999; 8(7):657. Presented at the 6 th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Barcelona, Spain, November 1999.

carre6 Keininger DL, Conway K, Acquadro C, Marquis P, Jambon B. Mapi Research Institute health-related quality of life database (IQOD) project. Presented at the Cochrane Collaboration Conference, Rome, Italy, October 1999.


 

Literature reviews

Articles


carre6 Acquadro C, Conway K, Hareendran A, Aaronson N; European Regulatory Issues and Quality of Life Assessment (ERIQA) Group. Literature Review of Methods to Translate Health-Related Quality of Life Questionnaires for Use in Multinational Clinical Trials. Value Health. 2007 Dec 18; Value Health. 2008 May-Jun;11(3):509-21. Epub 2007 Dec 18. Review.

carre6 Zollner YF, Acquadro C, Schaefer M. Literature review of instruments to assess health-related quality of life during and after menopause. Qual Life Res. 2005 Mar;14(2):309-27.

carre6 Coons SJ, Rao S, Keininger DL, Hays RD. A comparative review of generic quality of life instruments. PharmacoEconomics 2000;17:13-35.

Oral presentations

carre6 Garin O, Ferrer M, Van Ganse E, Petri G, Wiklund I, Mouly M, Romera B, Alonso J. Heart Failure specific Health-Related Quality of Life questionnaires. A systematic review. Quality of Life Research. 2002;11(7):628. Presented at the 9 th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Orlando, USA, November 2002.

carre6 Keininger DL. Quality of Life of Older Adults. Presented at the Third Advanced Postgraduate Course, European Academy for Medicine of Ageing. IKB Foundation, Sion, Switzerland. June 2000.

carre6 Keininger DL. A review of Available Health-related Quality of Life (HRQL) Reference Values in the medical Literature. Presented at the International Society for Pharmacoeconomics and Outcome Research , Edinburg, Scotland, November 1999.

Posters

carre6 Mouchet J, Acquadro C, Emery MP, Maier W. Review of all products authorized by the European Medicines Agency from 1995 to 2011 in regard to Pediatric Investigation Plan applications. Presented at the ISPOR 15th Annual European Congress, Berlin, Germany, November 2012.

carre6 Rudell K, Thrift-Perry M, Savre I, Perret C, Caron M. Instruments measuring treatment adherence and compliance in Diabetes Mellitus: A literature review. Presented at the ISPOR 17th Annual International Meeting, Washington DC, USA, June 2012.

carre6 Bricout H, Maier W, Mouchet J. Epidemiology of Staphylococcus Aureus Infections in Children: A Literature Review of the Last 10 Years. Value in Health. November 2011; 14(7), pA267-A268:PIN13. Presented at ISPOR 14th Annual European Congress, Madrid - Spain, November 2011.

carre6 Marquis P, Caron M, Emery M.P, Scott J, Acquadro C. The role of health-related quality of life data in the drug approval processes in the USA and Europe: A review of guidance documents and authorizations of medicinal products from 2006 to 2010. Value in Health. May 2011;14(3):pA28:PHP94. Presented at ISPOR 16th Annual International Meeting, Baltimore – USA, May 2011.

carre6 Marant C, Emery MP, Dias-Barbosa C, Swensen  A, Staniek V, Arnould B.  A disease model illustrating the impact of psoriasis on patient's lives. Presented at the 11th Annual European Meeting of the ISPOR, Athens, Greece, November 2008.

carre6 Guillemin I, Lam A, Richarz U, Kavanagh S, Emery MP, Benmedjahed K, Dubois D, Arnould B. Accessing the value of 24-hour chronic pain control from the patient perspective: do existing Patient-Reported Outcome instruments adequately cover the relevant concepts related to 24-hour chronic pain control? Presented at the 11th Annual European Meeting of the ISPOR, Athens, Greece, November 2008.

carre6 Staniek V, Williams AE, Emery MP, Marrel A, Dias-Barbosa C. Treatment satisfaction questionnaires in asthma and other chronic diseases. Presented at the 13th Annual International Meeting (ISPOR), Toronto, Ontario, Canada, May 3-7, 2008.

E, Emery MP. A literature review of treatment satisfaction, adherence and HRQL instruments used in type 1 and 2 diabetes. Value in Health, May/June 2006;9(3):A42. Presented at the 11th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Philadelphia, May 2006.

carre6 Emery MP, Staniek V. A Literature Review of Patient-reported Outcomes (PROs), Neuropsychological and Cognitive instruments in Parkinson's Disease. Value in Health, November/December 2006;9(6):A377. Presented at the 9th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Copenhagen, October 2006.

carre6 Staniek V, Bouin O, Minjoulat-Rey M-C, Emery MP, Arnould B, Prost L, Gabriel S. A Literature Review of Patient-Reported Outcomes (PRO) Used in Atrial Fibrillation. Presented at the 8th Annual European Meeting of the ISPOR, Florence, Italy, November 2005.

carre6 Staniek V, Arnould B, Hugonot-Diner L, Garcia Cebrian A, Monz B. Quality of life, emotional and physical symptoms in depression: A literature review of symptomatology and patient-reported outcome (PRO) instruments. Presented at the 10th Annual International Meeting of the ISPOR, Washington DC, May 2005.

carre6 Adesina KB, Abetz L, Akhras KS, Emery MP. Responsive health-related quality of life domains in the treatment of hypertension: a systematic review of published studies and measures. Quality of Life Research. 2001;10(3):252. Presented at the 8th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Amsterdam, The Netherlands, November 2001.

carre6 Abetz LN, Jones MKC, Adesina K, Emery MP. Quality of life and treatment satisfaction measurement with asthma patients: results from a comprehensive literature review. Value in Health. 2000;3(5):328-329. Presented at the 3rd Annual European Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Antwerp, Belgium, November 2000.

carre6 Emery MP, Adesina A, Marquis P, Sagnier PP, Kubin M. Measurement properties of quality of life instruments in erectile dysfunction (ED): a review of published results. Value in Health. 2000;3(2):99. Presented at the 5th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Crystal City, USA, May 2000.

carre6 Emery MP, Adesina A, Marquis P, Van Gool R. Psychometric validity of quality of life and utility measures in non-small cell lung cancer (NSCLC): a literature review. Value in Health. 2000;3(2):132. Presented at the 5th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Crystal City, USA, May 2000.


 

PROQOLID

Articles

carre6 Caron M, Perrier LL, Emery MP. In 2012, the Patient-Reported Outcomes and Quality of Life Instruments Database (PROQOLID) Celebrates a Major Feat: Its 10th Anniversary! Patient Reported Outcomes Newsletter. Spring Issue 2012; 47, pp.26-27.

carre6 Caron M, Perrier LL, Emery MP. Results from the Recent Survey Conducted Among PROQOLID Users. Patient Reported Outcomes Newsletter. Spring Issue 2012; 47, p.28.

carre6 Emery MP, Perrier LL, Acquadro C. Patient-reported outcome and quality of life instruments database (PROQOLID): frequently asked questions. Health Qual Life Outcomes. 2005 Mar 8;3(1):12.

carre6 Emery MP, Tamburini M, Pasquier E. QOLID: a new quality of life instruments database available on the Internet – www.QOLID.org. Quality of Life Newsletter. 2002;28(January-August):13

carre6 Emery MP, Tamburini M, Pasquier E. The Quality of Life Instruments Database (QOLID) project. Quality of Life Newsletter. 2001:27(July-Dec):21

Posters

carre6 Emery MP, Caron M, Perrier LL, Conway K. Patient-Reported Outcome and Quality of Life Instruments Database (PROQOLID): Evolution of Content, Structure, and Functionalities (2001-2012). Presented at the 19th Annual Conference of the International Society for Quality Of Life Research (ISOQOL), Budapest, Hungary, October 2012.

carre6 Caron M, Emery MP, Murison A, Perrier LL, Acquadro A. Overview of PRO Instruments from the PROQOLID Database for use in Taiwan. Presented at ISPOR 5th Asia Pacific-Conference, Taipei, Taiwan, September 2012.

carre6 Emery MP, Caron M, Perrier LL. PROQOLID Database: where are we ten years after its launch? Presented at the ISPOR 17th Annual International Meeting, Washington DC, USA, June 2012.

carre6 Perrier LL, Caron M, Emery MP. Overview of psychiatric Patient-Reported Outcome (PRO) instruments from the ProQolid database for use in South America. Presented at the 15th Annual Conference of the International Society for Quality Of Life Research (ISOQOL), Monteviedo, Uruguay, October 2008.

carre6 Perrier LL, Emery MP, Caron M. Overview of paediatric Patient-reported Outcome instruments from the ProQolid database: pathologies and level of validation. Quality of Life Research. 2007;13:A-125. Presented at the 14th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Toronto, Canada October 10 2007.

carre6 Emery MP, Perrier L-L, Khoury V. Regular update of PROQOLID, the Patient-Reported Outcome and Quality of Life Instruments Database (www.proqolid.org). Quality of Life Research. 2005;14(9):2061. Presented at the 12th Annual Conference of the International Society for Quality of Life Research (ISOQOL), San Francisco, USA, October 2005.

carre6 Emery MP, Tamburini M, Pasquier E. The Quality Of Life Instruments Database (QOLID). Quality of Life Research. 2001;10(3):260. Presented at the 8th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Amsterdam, The Netherlands, November 2001 and at the 9 th Annual Symposium for Quality of Life Evaluation (DIA), Hilton Head, USA, March 2002.

Oral presentations

carre6 Caron M, Perrier L.L, Vaissier V, Savre I, Acquadro C, Emery M.P. Update of The Patient-Reported Outcome And Quality Of Life Instruments Database (PROQOLID) Using The FDA Guidance On Pro Measures. Value in Health. November 2011; 14(7), pA239:UT2. Presented at ISPOR 14th Annual European Congress, Madrid - Spain, November 2011.

carre6 Emery MP, Anfray C. Analysis of the Patient-Reported Outcome (PRO) endpoints found in labeling claims of asthma drugs in Europe. Presented at the Annual Congress 2007 of the European Respiratory Society (ERS), Stockholm, Sweden September 2007.


 

PROLabels

Articles

carre6 Kitchen H, Rofail D, Caron M, Emery MP. Oncology patient-reported claims: maximizing the chances for success. Ecancermedicalscience 2011;5:212.

carre6 Caron M, Emery MP, Marquis P, Piault E, Scott J. Recent Trends in the Inclusion of Patient-Reported Outcome (PRO) Data in Approved Drugs Labeling by the FDA and EMEA. Patient Reported Outcomes Newsletter. Fall Issue 2008:40:8-10.

Posters

carre6 Perrier LL, Caron M, Murison A. Overview of the PROLabels database six years after its implementation. Presented at ISPOR 5th Asia Pacific-Conference, Taipei, Taiwan, September 2012.

carre6 Caron M, Acquadro C, Emery MP. What is the influence on clinical research of the EMA guideline on medicinal products for the treatment of Alzheimer's disease? Presented at the ISPOR 17th Annual International Meeting, Washington DC, USA, June 2012.

carre6 Caron M, Emery MP. The role of Patient-Reported Outcomes (PRO) as primary endpoints in the evaluation of medicines approved with PRO claims. Value in Health, November 2010; 13 (7), pA338:PMC49. Presented at ISPOR 13th Annual European Congress, Prague – Czech Republic, November 2010.

carre6 Caron M, Emery MP. PRO labelling claims in antineoplastic agents. Value in Health, May 2010; 13 (3), pA45:PCN111. Presented at ISPOR 15th International Meeting, Atlanta – USA, May 2010.

carre6 Caron M, Emery MP. Comparison of the PRO endpoints found in labeling claims of products for the treatment of psoriasis with those recommended by the corresponding EMEA guidance.
Value in Health, May 2010; 13 (3), pA148:PSS15. Presented at ISPOR 15th International Meeting, Atlanta – USA, May 2010.

carre6 Caron M, Emery M P, Marquis P, Piault E, Scott J. Patient-Reported Outcome (PRO) labeling claims in pain treatment: overview of us and European drug approvals. Presented at the 14th Annual International Meeting of the ISPOR, Orlando, USA, May 2009.

carre6 Caron M, Emery MP, Marquis P, Piault E. Update of recent trends in the inclusion of Patient-Reported Outcome (PRO) data in approved drugs labeling by the FDA and EMEA. Presented at the 11th Annual European Meeting of the ISPOR, Athens, Greece, November 2008.

carre6 Anfray C, Emery MP. Access to Patient-Reported Outcome (PRO) instruments and their translations in the light of FDA recommendations. Presented at the 13th Annual International Meeting (ISPOR), Toronto, Ontario, Canada, May 3-7, 2008.

carre6 Caron M, Emery MP, Marquis P, Piault E. Recent trends in the inclusion of Patient-Reported Outcome (PRO) data in approved drugs labeling by FDA and EMEA. Presented at the 13th Annual International Meeting (ISPOR), Toronto, Ontario, Canada, May 3-7, 2008.

carre6 Emery MP, Caron M, Marquis P, Piault E. Patient-Reported Outcome (PRO) labeling claims in Parkinson's disease: overview of US and European drug approvals. Value in Health. November/December 2007;10(6):A392. Presented at the Tenth Annual European Congress (ISPOR), Dublin, Ireland, October 20, 2007.

carre6 Caron M, Marquis P, Piault E, Emery MP. Analysis of the Patient-Reported Outcome (PRO) endpoints found in labeling claims of asthma drugs in Europe. Presented at the Annual Congress 2007 of the European Respiratory Society (ERS), Stockholm, Sweden September 2007.

carre6 Emery MP, Caron M, Marquis P, Piault E. Patient Reported Outcomes in labeling for oncology products: review of FDA and EMEA labels. Value in Health. May/June 2007;10(3):A141. Presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) 12th Annual International Meeting, Arlington, May 2007.

carre6 Emery MP, Caron M, Marquis P, Acquadro C, Piault E. Comparison of the PRO endpoints found in labeling claims of urinary incontinence drugs with those recommended by the corresponding EMEA Note for Guidance. Value in Health. November/December 2006;9(6):A391. Presented at the 9th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Copenhagen, October 2006.

carre6 Caron M, Emery MP, Marquis P, Acquadro C, Piault E. The PROLabels database: a new on-line tool to explore the wording and types of PRO included in approved medicinal products labels. Value in Health. May/June 2006;9(3):A61. Presented at the 13th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Lisbon, October 2006 and at the 11th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Philadelphia, May 2006.

Oral presentations

carre6 Marquis P, Caron M, Emery M.P, Scott J.A, Arnould B, Acquadro C. The role of health-related quality of life data in the drug approbal processes in the USA and Europe: A review of guidance documents and authorizations of medicinal products from 2006 to 2010. Presented at ISOQOL 18th Annual Conference, Denver - USA, October 2011.


 

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

Articles

carre6 Dulac Trimoreau M. New Questionnaires Distributed by Mapi Research Trust. Patient Reported Outcomes Newsletter. Fall Issue 2012:48:16-17.

carre6 Conway K, Acquadro C. Copyright Issues on Standardized Measures. Encyclopedia of QOL Research 2012.

carre6 Anfray C, Emery MP, Conway K, Acquadro C. Letter to the Editor: Questions of Copyright. Health and Quality of Life Outcomes 2012, 10:16.

carre6 Anfray C, Dulac Trimoreau M. New Questionnaires distributed by Mapi Research Trust. Patient Reported Outcomes Newsletter. Spring Issue 2010:43:9-10.

carre6 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

carre6 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.

carre6 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.

carre6 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.

carre6 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.

carre6 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.

carre6 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.

carre6 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

carre6 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

carre6 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.

carre6 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.

carre6 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.

 



 

2014 07 31

   

 

 

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Mapi Research Trust's catalog is now available on PROQOLID !

  

 

 

Some of the questionnaires distributed by Mapi Research Trust are now available for download through our PROQOLID database for Non-Funded Academic Users!
 

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