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Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP.

Identifieur interne : 001839 ( Main/Exploration ); précédent : 001838; suivant : 001840

Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP.

Auteurs : Peter P. Cheung ; Maarten De Wit ; Clifton O. Bingham ; John R. Kirwan ; Amye Leong ; Lyn M. March ; Pam Montie ; Marieke Scholte-Voshaar ; Laure Gossec

Source :

RBID : pubmed:25877496

Descripteurs français

English descriptors

Abstract

Patient participation in research is increasing; however, practical guidelines to enhance this participation are lacking. Specifically within the Outcome Measures in Rheumatology (OMERACT) organization, although patients have participated in OMERACT meetings since 2002, consensus about the procedures for involving patients in working groups has not been formalized. The objective is to develop a set of recommendations regarding patient research partner (PRP) involvement in research working groups.

DOI: 10.3899/jrheum.141011
PubMed: 25877496


Affiliations:


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<name sortKey="Cheung, Peter P" sort="Cheung, Peter P" uniqKey="Cheung P" first="Peter P" last="Cheung">Peter P. Cheung</name>
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<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology. Peter_cheung@nuhs</nlm:affiliation>
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<name sortKey="De Wit, Maarten" sort="De Wit, Maarten" uniqKey="De Wit M" first="Maarten" last="De Wit">Maarten De Wit</name>
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<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
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<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
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<name sortKey="Kirwan, John R" sort="Kirwan, John R" uniqKey="Kirwan J" first="John R" last="Kirwan">John R. Kirwan</name>
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<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
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<name sortKey="Leong, Amye" sort="Leong, Amye" uniqKey="Leong A" first="Amye" last="Leong">Amye Leong</name>
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<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
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<name sortKey="March, Lyn M" sort="March, Lyn M" uniqKey="March L" first="Lyn M" last="March">Lyn M. March</name>
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<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
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<name sortKey="Montie, Pam" sort="Montie, Pam" uniqKey="Montie P" first="Pam" last="Montie">Pam Montie</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
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<name sortKey="Scholte Voshaar, Marieke" sort="Scholte Voshaar, Marieke" uniqKey="Scholte Voshaar M" first="Marieke" last="Scholte-Voshaar">Marieke Scholte-Voshaar</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
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<name sortKey="Gossec, Laure" sort="Gossec, Laure" uniqKey="Gossec L" first="Laure" last="Gossec">Laure Gossec</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
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<title xml:lang="en">Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP.</title>
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<name sortKey="Cheung, Peter P" sort="Cheung, Peter P" uniqKey="Cheung P" first="Peter P" last="Cheung">Peter P. Cheung</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology. Peter_cheung@nuhs</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
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<name sortKey="De Wit, Maarten" sort="De Wit, Maarten" uniqKey="De Wit M" first="Maarten" last="De Wit">Maarten De Wit</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
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<name sortKey="Bingham, Clifton O" sort="Bingham, Clifton O" uniqKey="Bingham C" first="Clifton O" last="Bingham">Clifton O. Bingham</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Kirwan, John R" sort="Kirwan, John R" uniqKey="Kirwan J" first="John R" last="Kirwan">John R. Kirwan</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Leong, Amye" sort="Leong, Amye" uniqKey="Leong A" first="Amye" last="Leong">Amye Leong</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="March, Lyn M" sort="March, Lyn M" uniqKey="March L" first="Lyn M" last="March">Lyn M. March</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Montie, Pam" sort="Montie, Pam" uniqKey="Montie P" first="Pam" last="Montie">Pam Montie</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Scholte Voshaar, Marieke" sort="Scholte Voshaar, Marieke" uniqKey="Scholte Voshaar M" first="Marieke" last="Scholte-Voshaar">Marieke Scholte-Voshaar</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Gossec, Laure" sort="Gossec, Laure" uniqKey="Gossec L" first="Laure" last="Gossec">Laure Gossec</name>
<affiliation>
<nlm:affiliation>From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.</nlm:affiliation>
<wicri:noCountry code="subField">Department of Rheumatology</wicri:noCountry>
</affiliation>
</author>
</analytic>
<series>
<title level="j">The Journal of rheumatology</title>
<idno type="ISSN">0315-162X</idno>
<imprint>
<date when="2016" type="published">2016</date>
</imprint>
</series>
</biblStruct>
</sourceDesc>
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<textClass>
<keywords scheme="KwdEn" xml:lang="en">
<term>Consensus Development Conferences as Topic</term>
<term>Female</term>
<term>Humans</term>
<term>Male</term>
<term>Outcome Assessment (Health Care)</term>
<term>Patient Participation (statistics & numerical data)</term>
<term>Practice Guidelines as Topic</term>
<term>Research</term>
<term>Rheumatic Diseases (diagnosis)</term>
<term>Rheumatic Diseases (drug therapy)</term>
<term>Rheumatology (standards)</term>
</keywords>
<keywords scheme="KwdFr" xml:lang="fr">
<term>Conférences de consensus comme sujet</term>
<term>Femelle</term>
<term>Guides de bonnes pratiques cliniques comme sujet</term>
<term>Humains</term>
<term>Mâle</term>
<term>Participation du patient ()</term>
<term>Recherche</term>
<term>Rhumatismes (diagnostic)</term>
<term>Rhumatismes (traitement médicamenteux)</term>
<term>Rhumatologie (normes)</term>
<term>Évaluation de résultat (soins)</term>
</keywords>
<keywords scheme="MESH" qualifier="diagnosis" xml:lang="en">
<term>Rheumatic Diseases</term>
</keywords>
<keywords scheme="MESH" qualifier="diagnostic" xml:lang="fr">
<term>Rhumatismes</term>
</keywords>
<keywords scheme="MESH" qualifier="drug therapy" xml:lang="en">
<term>Rheumatic Diseases</term>
</keywords>
<keywords scheme="MESH" qualifier="normes" xml:lang="fr">
<term>Rhumatologie</term>
</keywords>
<keywords scheme="MESH" qualifier="standards" xml:lang="en">
<term>Rheumatology</term>
</keywords>
<keywords scheme="MESH" qualifier="statistics & numerical data" xml:lang="en">
<term>Patient Participation</term>
</keywords>
<keywords scheme="MESH" qualifier="traitement médicamenteux" xml:lang="fr">
<term>Rhumatismes</term>
</keywords>
<keywords scheme="MESH" xml:lang="en">
<term>Consensus Development Conferences as Topic</term>
<term>Female</term>
<term>Humans</term>
<term>Male</term>
<term>Outcome Assessment (Health Care)</term>
<term>Practice Guidelines as Topic</term>
<term>Research</term>
</keywords>
<keywords scheme="MESH" xml:lang="fr">
<term>Conférences de consensus comme sujet</term>
<term>Femelle</term>
<term>Guides de bonnes pratiques cliniques comme sujet</term>
<term>Humains</term>
<term>Mâle</term>
<term>Participation du patient</term>
<term>Recherche</term>
<term>Évaluation de résultat (soins)</term>
</keywords>
</textClass>
</profileDesc>
</teiHeader>
<front>
<div type="abstract" xml:lang="en">Patient participation in research is increasing; however, practical guidelines to enhance this participation are lacking. Specifically within the Outcome Measures in Rheumatology (OMERACT) organization, although patients have participated in OMERACT meetings since 2002, consensus about the procedures for involving patients in working groups has not been formalized. The objective is to develop a set of recommendations regarding patient research partner (PRP) involvement in research working groups.</div>
</front>
</TEI>
<affiliations>
<list></list>
<tree>
<noCountry>
<name sortKey="Bingham, Clifton O" sort="Bingham, Clifton O" uniqKey="Bingham C" first="Clifton O" last="Bingham">Clifton O. Bingham</name>
<name sortKey="Cheung, Peter P" sort="Cheung, Peter P" uniqKey="Cheung P" first="Peter P" last="Cheung">Peter P. Cheung</name>
<name sortKey="De Wit, Maarten" sort="De Wit, Maarten" uniqKey="De Wit M" first="Maarten" last="De Wit">Maarten De Wit</name>
<name sortKey="Gossec, Laure" sort="Gossec, Laure" uniqKey="Gossec L" first="Laure" last="Gossec">Laure Gossec</name>
<name sortKey="Kirwan, John R" sort="Kirwan, John R" uniqKey="Kirwan J" first="John R" last="Kirwan">John R. Kirwan</name>
<name sortKey="Leong, Amye" sort="Leong, Amye" uniqKey="Leong A" first="Amye" last="Leong">Amye Leong</name>
<name sortKey="March, Lyn M" sort="March, Lyn M" uniqKey="March L" first="Lyn M" last="March">Lyn M. March</name>
<name sortKey="Montie, Pam" sort="Montie, Pam" uniqKey="Montie P" first="Pam" last="Montie">Pam Montie</name>
<name sortKey="Scholte Voshaar, Marieke" sort="Scholte Voshaar, Marieke" uniqKey="Scholte Voshaar M" first="Marieke" last="Scholte-Voshaar">Marieke Scholte-Voshaar</name>
</noCountry>
</tree>
</affiliations>
</record>

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