How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting
Identifieur interne : 000F40 ( Pmc/Checkpoint ); précédent : 000F39; suivant : 000F41How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting
Auteurs : Kate Breckenridge [Royaume-Uni] ; Hillary L. Bekker [Royaume-Uni] ; Elizabeth Gibbons [Royaume-Uni] ; Sabine N. Van Der Veer [Belgique, Royaume-Uni] ; Denise Abbott [Royaume-Uni] ; Serge Briançon [France] ; Ron Cullen [Royaume-Uni] ; Liliana Garneata [Roumanie] ; Kitty J. Jager [Pays-Bas] ; Kjersti L Nning [Norvège] ; Wendy Metcalfe [Royaume-Uni] ; Rachael L. Morton [Australie, Royaume-Uni] ; Fliss E. M. Murtagh [Royaume-Uni] ; Karl Prutz [Suède] ; Susan Robertson [Royaume-Uni] ; Ivan Rychlik [République tchèque] ; Steffan Schon [Suède] ; Linda Sharp [Irlande (pays)] ; Elodie Speyer [France] ; Francesca Tentori [États-Unis] ; Fergus J. Caskey [Royaume-Uni]Source :
- Nephrology Dialysis Transplantation [ 0931-0509 ] ; 2015.
Abstract
Despite the potential for patient-reported outcome measures (PROMs) and experience measures (PREMs) to enhance understanding of patient experiences and outcomes they have not, to date, been widely incorporated into renal registry datasets. This report summarizes the main points learned from an ERA-EDTA QUEST-funded consensus meeting on how to routinely collect PROMs and PREMs in renal registries in Europe. In preparation for the meeting, we surveyed all European renal registries to establish current or planned efforts to collect PROMs/PREMs. A systematic review of the literature was performed. Publications reporting barriers and/or facilitators to PROMs/PREMs collection by registries were identified and a narrative synthesis undertaken. A group of renal registry representatives, PROMs/PREMs experts and patient representatives then met to (i) share any experience renal registries in Europe have in this area; (ii) establish how patient-reported data might be collected by understanding how registries currently collect routine data and how patient-reported data is collected in other settings; (iii) harmonize the future collection of patient-reported data by renal registries in Europe by agreeing upon preferred instruments and (iv) to identify the barriers to routine collection of patient-reported data in renal registries in Europe. In total, 23 of the 45 European renal registries responded to the survey. Two reported experience in collecting PROMs and three stated that they were actively exploring ways to do so. The systematic review identified 157 potentially relevant articles of which 9 met the inclusion criteria and were analysed for barriers and facilitators to routine PROM/PREM collection. Thirteen themes were identified and mapped to a three-stage framework around establishing the need, setting up and maintaining the routine collection of PROMs/PREMs. At the consensus meeting some PROMs instruments were agreed for routine renal registry collection (the generic SF-12, the disease-specific KDQOL™-36 and EQ-5D-5L to be able to derive quality-adjusted life years), but further work was felt to be needed before recommending PREMs. Routinely collecting PROMs and PREMs in renal registries is important if we are to better understand what matters to patients but it is likely to be challenging; close international collaboration will be beneficial.
Url:
DOI: 10.1093/ndt/gfv209
PubMed: 25982327
PubMed Central: 4569391
Affiliations:
- Australie, Belgique, France, Irlande (pays), Norvège, Pays-Bas, Roumanie, Royaume-Uni, République tchèque, Suède, États-Unis
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Bekker</name><affiliation wicri:level="1"><nlm:aff id="af2"><addr-line>Leeds Institute of Health Sciences, School of Medicine</addr-line>,<institution>University of Leeds</institution>,<addr-line>Leeds</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Gibbons, Elizabeth" sort="Gibbons, Elizabeth" uniqKey="Gibbons E" first="Elizabeth" last="Gibbons">Elizabeth Gibbons</name><affiliation wicri:level="1"><nlm:aff id="af3"><addr-line>Health Services Research Unit, Nuffield Department of Population Health</addr-line>,<institution>University of Oxford</institution>,<addr-line>Oxford</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Van Der Veer, Sabine N" sort="Van Der Veer, Sabine N" uniqKey="Van Der Veer S" first="Sabine N." last="Van Der Veer">Sabine N. Van Der Veer</name><affiliation wicri:level="1"><nlm:aff id="af4"><addr-line>European Renal Best Practice, Methods Support Team</addr-line>,<institution>University Hospital Ghent</institution>,<addr-line>Ghent</addr-line>,<country>Belgium</country></nlm:aff><country xml:lang="fr">Belgique</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af5"><addr-line>Health eResearch Centre, Farr Institute for Health Informatics Research</addr-line>,<institution>University of Manchester</institution>,<addr-line>Manchester</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Abbott, Denise" sort="Abbott, Denise" uniqKey="Abbott D" first="Denise" last="Abbott">Denise Abbott</name><affiliation wicri:level="1"><nlm:aff id="af6"><institution>The National Kidney Federation</institution>,<addr-line>Shireoaks, Worksop</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Briancon, Serge" sort="Briancon, Serge" uniqKey="Briancon S" first="Serge" last="Briançon">Serge Briançon</name><affiliation wicri:level="1"><nlm:aff id="af7"><addr-line>CHU de Nancy</addr-line>,<institution>Epidémiologie et évaluation cliniques, Inserm CIC 1433</institution>,<addr-line>Nancy</addr-line>,<country>France</country></nlm:aff><country xml:lang="fr">France</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Cullen, Ron" sort="Cullen, Ron" uniqKey="Cullen R" first="Ron" last="Cullen">Ron Cullen</name><affiliation wicri:level="1"><nlm:aff id="af1"><addr-line>UK Renal Registry</addr-line>,<institution>Southmead Hospital</institution>,<addr-line>Bristol</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Garneata, Liliana" sort="Garneata, Liliana" uniqKey="Garneata L" first="Liliana" last="Garneata">Liliana Garneata</name><affiliation wicri:level="1"><nlm:aff id="af8"><institution>‘Dr Carol Davila’ Teaching Hospital of Nephrology</institution>,<addr-line>Bucharest</addr-line>,<country>Romania</country></nlm:aff><country xml:lang="fr">Roumanie</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Jager, Kitty J" sort="Jager, Kitty J" uniqKey="Jager K" first="Kitty J." last="Jager">Kitty J. Jager</name><affiliation wicri:level="1"><nlm:aff id="af9"><addr-line>European Renal Association–European Dialysis and Transplant Association Registry, Department of Medical Informatics, Academic Medical Center</addr-line>,<institution>University of Amsterdam</institution>,<addr-line>Amsterdam</addr-line>,<country>The Netherlands</country></nlm:aff><country xml:lang="fr">Pays-Bas</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="L Nning, Kjersti" sort="L Nning, Kjersti" uniqKey="L Nning K" first="Kjersti" last="L Nning">Kjersti L Nning</name><affiliation wicri:level="1"><nlm:aff id="af10"><addr-line>Section of Nephrology, Department of Organ Transplantation</addr-line>,<institution>Oslo University Hospital Rikshospitalet</institution>,<addr-line>Oslo</addr-line>,<country>Norway</country></nlm:aff><country xml:lang="fr">Norvège</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Metcalfe, Wendy" sort="Metcalfe, Wendy" uniqKey="Metcalfe W" first="Wendy" last="Metcalfe">Wendy Metcalfe</name><affiliation wicri:level="1"><nlm:aff id="af11"><addr-line>Renal Unit</addr-line>,<institution>Royal Infirmary of Edinburgh</institution>,<addr-line>Edinburgh</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af12"><institution>The Scottish Renal Registry</institution>,<addr-line>Glasgow</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Morton, Rachael L" sort="Morton, Rachael L" uniqKey="Morton R" first="Rachael L." last="Morton">Rachael L. Morton</name><affiliation wicri:level="1"><nlm:aff id="af13"><addr-line>School of Public Health</addr-line>,<institution>The University of Sydney</institution>,<addr-line>Sydney</addr-line>,<country>Australia</country></nlm:aff><country xml:lang="fr">Australie</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af14"><addr-line>Health Economics Research Centre, Nuffield Department of Population Health</addr-line>,<institution>University of Oxford</institution>,<addr-line>Headington</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Murtagh, Fliss E M" sort="Murtagh, Fliss E M" uniqKey="Murtagh F" first="Fliss E. M." last="Murtagh">Fliss E. M. Murtagh</name><affiliation wicri:level="1"><nlm:aff id="af15"><addr-line>Department of Palliative Care, Policy & Rehabilitation</addr-line>,<institution>King's College London, Cicely Saunders Institute</institution>,<addr-line>London</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Prutz, Karl" sort="Prutz, Karl" uniqKey="Prutz K" first="Karl" last="Prutz">Karl Prutz</name><affiliation wicri:level="1"><nlm:aff id="af16"><institution>Swedish Renal Registry</institution>,<addr-line>Jönköping</addr-line>,<country>Sweden</country></nlm:aff><country xml:lang="fr">Suède</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af17"><addr-line>Department of Internal Medicine</addr-line>,<institution>Hospital of Helsingborg</institution>,<addr-line>Helsingborg</addr-line>,<country>Sweden</country></nlm:aff><country xml:lang="fr">Suède</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Robertson, Susan" sort="Robertson, Susan" uniqKey="Robertson S" first="Susan" last="Robertson">Susan Robertson</name><affiliation wicri:level="1"><nlm:aff id="af18"><institution>Dumfries and Galloway Royal Infirmary</institution>,<addr-line>Dumfries</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Rychlik, Ivan" sort="Rychlik, Ivan" uniqKey="Rychlik I" first="Ivan" last="Rychlik">Ivan Rychlik</name><affiliation wicri:level="1"><nlm:aff id="af19"><addr-line>2nd Department of Medicine, 3rd Faculty of Medicine</addr-line>,<institution>Charles University</institution>,<addr-line>Prague</addr-line>,<country>Czech Republic</country></nlm:aff><country xml:lang="fr">République tchèque</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Schon, Steffan" sort="Schon, Steffan" uniqKey="Schon S" first="Steffan" last="Schon">Steffan Schon</name><affiliation wicri:level="1"><nlm:aff id="af16"><institution>Swedish Renal Registry</institution>,<addr-line>Jönköping</addr-line>,<country>Sweden</country></nlm:aff><country xml:lang="fr">Suède</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af20"><institution>Diaverum Renal Services Group</institution>,<addr-line>Lund</addr-line>,<country>Sweden</country></nlm:aff><country xml:lang="fr">Suède</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Sharp, Linda" sort="Sharp, Linda" uniqKey="Sharp L" first="Linda" last="Sharp">Linda Sharp</name><affiliation wicri:level="1"><nlm:aff id="af21"><institution>National Cancer Registry Ireland</institution>,<addr-line>Cork</addr-line>,<country>Ireland</country></nlm:aff><country xml:lang="fr">Irlande (pays)</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Speyer, Elodie" sort="Speyer, Elodie" uniqKey="Speyer E" first="Elodie" last="Speyer">Elodie Speyer</name><affiliation wicri:level="1"><nlm:aff id="af22"><addr-line>CHU Nancy, Pôle QSP2</addr-line>,<institution>Epidémiologie et Evaluation Cliniques</institution>,<addr-line>Nancy</addr-line>,<country>France</country></nlm:aff><country xml:lang="fr">France</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af23"><institution>Université de Lorraine, Université Paris Descartes</institution>,<addr-line>Nancy</addr-line>,<country>France</country></nlm:aff><country xml:lang="fr">France</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Tentori, Francesca" sort="Tentori, Francesca" uniqKey="Tentori F" first="Francesca" last="Tentori">Francesca Tentori</name><affiliation wicri:level="1"><nlm:aff id="af24"><institution>Arbor Research Collaborative for Health</institution>,<addr-line>Ann Arbor, MI</addr-line>,<country>USA</country></nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Caskey, Fergus J" sort="Caskey, Fergus J" uniqKey="Caskey F" first="Fergus J." last="Caskey">Fergus J. Caskey</name><affiliation wicri:level="1"><nlm:aff id="af1"><addr-line>UK Renal Registry</addr-line>,<institution>Southmead Hospital</institution>,<addr-line>Bristol</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af25"><addr-line>School of Social and Community Medicine</addr-line>,<institution>University of Bristol</institution>,<addr-line>Bristol</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">25982327</idno><idno type="pmc">4569391</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4569391</idno><idno type="RBID">PMC:4569391</idno><idno type="doi">10.1093/ndt/gfv209</idno><date when="2015">2015</date><idno type="wicri:Area/Pmc/Corpus">000414</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">000414</idno><idno type="wicri:Area/Pmc/Curation">000414</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Curation">000414</idno><idno type="wicri:Area/Pmc/Checkpoint">000F40</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Checkpoint">000F40</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting</title><author><name sortKey="Breckenridge, Kate" sort="Breckenridge, Kate" uniqKey="Breckenridge K" first="Kate" last="Breckenridge">Kate Breckenridge</name><affiliation wicri:level="1"><nlm:aff id="af1"><addr-line>UK Renal Registry</addr-line>,<institution>Southmead Hospital</institution>,<addr-line>Bristol</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Bekker, Hillary L" sort="Bekker, Hillary L" uniqKey="Bekker H" first="Hillary L." last="Bekker">Hillary L. Bekker</name><affiliation wicri:level="1"><nlm:aff id="af2"><addr-line>Leeds Institute of Health Sciences, School of Medicine</addr-line>,<institution>University of Leeds</institution>,<addr-line>Leeds</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Gibbons, Elizabeth" sort="Gibbons, Elizabeth" uniqKey="Gibbons E" first="Elizabeth" last="Gibbons">Elizabeth Gibbons</name><affiliation wicri:level="1"><nlm:aff id="af3"><addr-line>Health Services Research Unit, Nuffield Department of Population Health</addr-line>,<institution>University of Oxford</institution>,<addr-line>Oxford</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Van Der Veer, Sabine N" sort="Van Der Veer, Sabine N" uniqKey="Van Der Veer S" first="Sabine N." last="Van Der Veer">Sabine N. Van Der Veer</name><affiliation wicri:level="1"><nlm:aff id="af4"><addr-line>European Renal Best Practice, Methods Support Team</addr-line>,<institution>University Hospital Ghent</institution>,<addr-line>Ghent</addr-line>,<country>Belgium</country></nlm:aff><country xml:lang="fr">Belgique</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af5"><addr-line>Health eResearch Centre, Farr Institute for Health Informatics Research</addr-line>,<institution>University of Manchester</institution>,<addr-line>Manchester</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Abbott, Denise" sort="Abbott, Denise" uniqKey="Abbott D" first="Denise" last="Abbott">Denise Abbott</name><affiliation wicri:level="1"><nlm:aff id="af6"><institution>The National Kidney Federation</institution>,<addr-line>Shireoaks, Worksop</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Briancon, Serge" sort="Briancon, Serge" uniqKey="Briancon S" first="Serge" last="Briançon">Serge Briançon</name><affiliation wicri:level="1"><nlm:aff id="af7"><addr-line>CHU de Nancy</addr-line>,<institution>Epidémiologie et évaluation cliniques, Inserm CIC 1433</institution>,<addr-line>Nancy</addr-line>,<country>France</country></nlm:aff><country xml:lang="fr">France</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Cullen, Ron" sort="Cullen, Ron" uniqKey="Cullen R" first="Ron" last="Cullen">Ron Cullen</name><affiliation wicri:level="1"><nlm:aff id="af1"><addr-line>UK Renal Registry</addr-line>,<institution>Southmead Hospital</institution>,<addr-line>Bristol</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Garneata, Liliana" sort="Garneata, Liliana" uniqKey="Garneata L" first="Liliana" last="Garneata">Liliana Garneata</name><affiliation wicri:level="1"><nlm:aff id="af8"><institution>‘Dr Carol Davila’ Teaching Hospital of Nephrology</institution>,<addr-line>Bucharest</addr-line>,<country>Romania</country></nlm:aff><country xml:lang="fr">Roumanie</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Jager, Kitty J" sort="Jager, Kitty J" uniqKey="Jager K" first="Kitty J." last="Jager">Kitty J. Jager</name><affiliation wicri:level="1"><nlm:aff id="af9"><addr-line>European Renal Association–European Dialysis and Transplant Association Registry, Department of Medical Informatics, Academic Medical Center</addr-line>,<institution>University of Amsterdam</institution>,<addr-line>Amsterdam</addr-line>,<country>The Netherlands</country></nlm:aff><country xml:lang="fr">Pays-Bas</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="L Nning, Kjersti" sort="L Nning, Kjersti" uniqKey="L Nning K" first="Kjersti" last="L Nning">Kjersti L Nning</name><affiliation wicri:level="1"><nlm:aff id="af10"><addr-line>Section of Nephrology, Department of Organ Transplantation</addr-line>,<institution>Oslo University Hospital Rikshospitalet</institution>,<addr-line>Oslo</addr-line>,<country>Norway</country></nlm:aff><country xml:lang="fr">Norvège</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Metcalfe, Wendy" sort="Metcalfe, Wendy" uniqKey="Metcalfe W" first="Wendy" last="Metcalfe">Wendy Metcalfe</name><affiliation wicri:level="1"><nlm:aff id="af11"><addr-line>Renal Unit</addr-line>,<institution>Royal Infirmary of Edinburgh</institution>,<addr-line>Edinburgh</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af12"><institution>The Scottish Renal Registry</institution>,<addr-line>Glasgow</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Morton, Rachael L" sort="Morton, Rachael L" uniqKey="Morton R" first="Rachael L." last="Morton">Rachael L. Morton</name><affiliation wicri:level="1"><nlm:aff id="af13"><addr-line>School of Public Health</addr-line>,<institution>The University of Sydney</institution>,<addr-line>Sydney</addr-line>,<country>Australia</country></nlm:aff><country xml:lang="fr">Australie</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af14"><addr-line>Health Economics Research Centre, Nuffield Department of Population Health</addr-line>,<institution>University of Oxford</institution>,<addr-line>Headington</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Murtagh, Fliss E M" sort="Murtagh, Fliss E M" uniqKey="Murtagh F" first="Fliss E. M." last="Murtagh">Fliss E. M. Murtagh</name><affiliation wicri:level="1"><nlm:aff id="af15"><addr-line>Department of Palliative Care, Policy & Rehabilitation</addr-line>,<institution>King's College London, Cicely Saunders Institute</institution>,<addr-line>London</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Prutz, Karl" sort="Prutz, Karl" uniqKey="Prutz K" first="Karl" last="Prutz">Karl Prutz</name><affiliation wicri:level="1"><nlm:aff id="af16"><institution>Swedish Renal Registry</institution>,<addr-line>Jönköping</addr-line>,<country>Sweden</country></nlm:aff><country xml:lang="fr">Suède</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af17"><addr-line>Department of Internal Medicine</addr-line>,<institution>Hospital of Helsingborg</institution>,<addr-line>Helsingborg</addr-line>,<country>Sweden</country></nlm:aff><country xml:lang="fr">Suède</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Robertson, Susan" sort="Robertson, Susan" uniqKey="Robertson S" first="Susan" last="Robertson">Susan Robertson</name><affiliation wicri:level="1"><nlm:aff id="af18"><institution>Dumfries and Galloway Royal Infirmary</institution>,<addr-line>Dumfries</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Rychlik, Ivan" sort="Rychlik, Ivan" uniqKey="Rychlik I" first="Ivan" last="Rychlik">Ivan Rychlik</name><affiliation wicri:level="1"><nlm:aff id="af19"><addr-line>2nd Department of Medicine, 3rd Faculty of Medicine</addr-line>,<institution>Charles University</institution>,<addr-line>Prague</addr-line>,<country>Czech Republic</country></nlm:aff><country xml:lang="fr">République tchèque</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Schon, Steffan" sort="Schon, Steffan" uniqKey="Schon S" first="Steffan" last="Schon">Steffan Schon</name><affiliation wicri:level="1"><nlm:aff id="af16"><institution>Swedish Renal Registry</institution>,<addr-line>Jönköping</addr-line>,<country>Sweden</country></nlm:aff><country xml:lang="fr">Suède</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af20"><institution>Diaverum Renal Services Group</institution>,<addr-line>Lund</addr-line>,<country>Sweden</country></nlm:aff><country xml:lang="fr">Suède</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Sharp, Linda" sort="Sharp, Linda" uniqKey="Sharp L" first="Linda" last="Sharp">Linda Sharp</name><affiliation wicri:level="1"><nlm:aff id="af21"><institution>National Cancer Registry Ireland</institution>,<addr-line>Cork</addr-line>,<country>Ireland</country></nlm:aff><country xml:lang="fr">Irlande (pays)</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Speyer, Elodie" sort="Speyer, Elodie" uniqKey="Speyer E" first="Elodie" last="Speyer">Elodie Speyer</name><affiliation wicri:level="1"><nlm:aff id="af22"><addr-line>CHU Nancy, Pôle QSP2</addr-line>,<institution>Epidémiologie et Evaluation Cliniques</institution>,<addr-line>Nancy</addr-line>,<country>France</country></nlm:aff><country xml:lang="fr">France</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af23"><institution>Université de Lorraine, Université Paris Descartes</institution>,<addr-line>Nancy</addr-line>,<country>France</country></nlm:aff><country xml:lang="fr">France</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Tentori, Francesca" sort="Tentori, Francesca" uniqKey="Tentori F" first="Francesca" last="Tentori">Francesca Tentori</name><affiliation wicri:level="1"><nlm:aff id="af24"><institution>Arbor Research Collaborative for Health</institution>,<addr-line>Ann Arbor, MI</addr-line>,<country>USA</country></nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author><author><name sortKey="Caskey, Fergus J" sort="Caskey, Fergus J" uniqKey="Caskey F" first="Fergus J." last="Caskey">Fergus J. Caskey</name><affiliation wicri:level="1"><nlm:aff id="af1"><addr-line>UK Renal Registry</addr-line>,<institution>Southmead Hospital</institution>,<addr-line>Bristol</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="af25"><addr-line>School of Social and Community Medicine</addr-line>,<institution>University of Bristol</institution>,<addr-line>Bristol</addr-line>,<country>UK</country></nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea># see nlm:aff country strict</wicri:regionArea></affiliation></author></analytic><series><title level="j">Nephrology Dialysis Transplantation</title><idno type="ISSN">0931-0509</idno><idno type="eISSN">1460-2385</idno><imprint><date when="2015">2015</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p>Despite the potential for patient-reported outcome measures (PROMs) and experience measures (PREMs) to enhance understanding of patient experiences and outcomes they have not, to date, been widely incorporated into renal registry datasets. This report summarizes the main points learned from an ERA-EDTA QUEST-funded consensus meeting on how to routinely collect PROMs and PREMs in renal registries in Europe. In preparation for the meeting, we surveyed all European renal registries to establish current or planned efforts to collect PROMs/PREMs. A systematic review of the literature was performed. Publications reporting barriers and/or facilitators to PROMs/PREMs collection by registries were identified and a narrative synthesis undertaken. A group of renal registry representatives, PROMs/PREMs experts and patient representatives then met to (i) share any experience renal registries in Europe have in this area; (ii) establish how patient-reported data might be collected by understanding how registries currently collect routine data and how patient-reported data is collected in other settings; (iii) harmonize the future collection of patient-reported data by renal registries in Europe by agreeing upon preferred instruments and (iv) to identify the barriers to routine collection of patient-reported data in renal registries in Europe. In total, 23 of the 45 European renal registries responded to the survey. Two reported experience in collecting PROMs and three stated that they were actively exploring ways to do so. The systematic review identified 157 potentially relevant articles of which 9 met the inclusion criteria and were analysed for barriers and facilitators to routine PROM/PREM collection. Thirteen themes were identified and mapped to a three-stage framework around establishing the need, setting up and maintaining the routine collection of PROMs/PREMs. At the consensus meeting some PROMs instruments were agreed for routine renal registry collection (the generic SF-12, the disease-specific KDQOL™-36 and EQ-5D-5L to be able to derive quality-adjusted life years), but further work was felt to be needed before recommending PREMs. Routinely collecting PROMs and PREMs in renal registries is important if we are to better understand what matters to patients but it is likely to be challenging; close international collaboration will be beneficial.</p></div></front><back><div1 type="bibliography"><listBibl><biblStruct></biblStruct><biblStruct><analytic><author><name sortKey="Mittal, Sk" uniqKey="Mittal S">SK Mittal</name></author><author><name sortKey="Ahern, L" uniqKey="Ahern L">L Ahern</name></author><author><name sortKey="Flaster, E" uniqKey="Flaster E">E 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<front><journal-meta><journal-id journal-id-type="nlm-ta">Nephrol Dial Transplant</journal-id><journal-id journal-id-type="iso-abbrev">Nephrol. Dial. Transplant</journal-id><journal-id journal-id-type="publisher-id">ndt</journal-id><journal-id journal-id-type="hwp">ndt</journal-id><journal-title-group><journal-title>Nephrology Dialysis Transplantation</journal-title></journal-title-group><issn pub-type="ppub">0931-0509</issn><issn pub-type="epub">1460-2385</issn><publisher><publisher-name>Oxford University Press</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="pmid">25982327</article-id><article-id pub-id-type="pmc">4569391</article-id><article-id pub-id-type="doi">10.1093/ndt/gfv209</article-id><article-id pub-id-type="publisher-id">gfv209</article-id><article-categories><subj-group subj-group-type="heading"><subject>Cutting-Edge Renal Science</subject><subj-group subj-group-type="heading"><subject>Ndt Perspectives</subject></subj-group></subj-group></article-categories><title-group><article-title>How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting</article-title></title-group><contrib-group><contrib contrib-type="author"><name><surname>Breckenridge</surname><given-names>Kate</given-names></name><xref ref-type="aff" rid="af1">1</xref></contrib><contrib contrib-type="author"><name><surname>Bekker</surname><given-names>Hillary L.</given-names></name><xref ref-type="aff" rid="af2">2</xref></contrib><contrib contrib-type="author"><name><surname>Gibbons</surname><given-names>Elizabeth</given-names></name><xref ref-type="aff" rid="af3">3</xref></contrib><contrib contrib-type="author"><name><surname>van der Veer</surname><given-names>Sabine N.</given-names></name><xref ref-type="aff" rid="af4">4</xref><xref ref-type="aff" rid="af5">5</xref></contrib><contrib contrib-type="author"><name><surname>Abbott</surname><given-names>Denise</given-names></name><xref ref-type="aff" rid="af6">6</xref></contrib><contrib contrib-type="author"><name><surname>Briançon</surname><given-names>Serge</given-names></name><xref ref-type="aff" rid="af7">7</xref></contrib><contrib contrib-type="author"><name><surname>Cullen</surname><given-names>Ron</given-names></name><xref ref-type="aff" rid="af1">1</xref></contrib><contrib contrib-type="author"><name><surname>Garneata</surname><given-names>Liliana</given-names></name><xref ref-type="aff" rid="af8">8</xref></contrib><contrib contrib-type="author"><name><surname>Jager</surname><given-names>Kitty J.</given-names></name><xref ref-type="aff" rid="af9">9</xref></contrib><contrib contrib-type="author"><name><surname>Lønning</surname><given-names>Kjersti</given-names></name><xref ref-type="aff" rid="af10">10</xref></contrib><contrib contrib-type="author"><name><surname>Metcalfe</surname><given-names>Wendy</given-names></name><xref ref-type="aff" rid="af11">11</xref><xref ref-type="aff" rid="af12">12</xref></contrib><contrib contrib-type="author"><name><surname>Morton</surname><given-names>Rachael L.</given-names></name><xref ref-type="aff" rid="af13">13</xref><xref ref-type="aff" rid="af14">14</xref></contrib><contrib contrib-type="author"><name><surname>Murtagh</surname><given-names>Fliss E.M.</given-names></name><xref ref-type="aff" rid="af15">15</xref></contrib><contrib contrib-type="author"><name><surname>Prutz</surname><given-names>Karl</given-names></name><xref ref-type="aff" rid="af16">16</xref><xref ref-type="aff" rid="af17">17</xref></contrib><contrib contrib-type="author"><name><surname>Robertson</surname><given-names>Susan</given-names></name><xref ref-type="aff" rid="af18">18</xref></contrib><contrib contrib-type="author"><name><surname>Rychlik</surname><given-names>Ivan</given-names></name><xref ref-type="aff" rid="af19">19</xref></contrib><contrib contrib-type="author"><name><surname>Schon</surname><given-names>Steffan</given-names></name><xref ref-type="aff" rid="af16">16</xref><xref ref-type="aff" rid="af20">20</xref></contrib><contrib contrib-type="author"><name><surname>Sharp</surname><given-names>Linda</given-names></name><xref ref-type="aff" rid="af21">21</xref></contrib><contrib contrib-type="author"><name><surname>Speyer</surname><given-names>Elodie</given-names></name><xref ref-type="aff" rid="af22">22</xref><xref ref-type="aff" rid="af23">23</xref></contrib><contrib contrib-type="author"><name><surname>Tentori</surname><given-names>Francesca</given-names></name><xref ref-type="aff" rid="af24">24</xref></contrib><contrib contrib-type="author"><name><surname>Caskey</surname><given-names>Fergus J.</given-names></name><xref ref-type="aff" rid="af1">1</xref><xref ref-type="aff" rid="af25">25</xref></contrib><aff id="af1"><label>1</label><addr-line>UK Renal Registry</addr-line>,<institution>Southmead Hospital</institution>,<addr-line>Bristol</addr-line>,<country>UK</country></aff><aff id="af2"><label>2</label><addr-line>Leeds Institute of Health Sciences, School of Medicine</addr-line>,<institution>University of Leeds</institution>,<addr-line>Leeds</addr-line>,<country>UK</country></aff><aff id="af3"><label>3</label><addr-line>Health Services Research Unit, Nuffield Department of Population Health</addr-line>,<institution>University of Oxford</institution>,<addr-line>Oxford</addr-line>,<country>UK</country></aff><aff id="af4"><label>4</label><addr-line>European Renal Best Practice, Methods Support Team</addr-line>,<institution>University Hospital Ghent</institution>,<addr-line>Ghent</addr-line>,<country>Belgium</country></aff><aff id="af5"><label>5</label><addr-line>Health eResearch Centre, Farr Institute for Health Informatics Research</addr-line>,<institution>University of Manchester</institution>,<addr-line>Manchester</addr-line>,<country>UK</country></aff><aff id="af6"><label>6</label><institution>The National Kidney Federation</institution>,<addr-line>Shireoaks, Worksop</addr-line>,<country>UK</country></aff><aff id="af7"><label>7</label><addr-line>CHU de Nancy</addr-line>,<institution>Epidémiologie et évaluation cliniques, Inserm CIC 1433</institution>,<addr-line>Nancy</addr-line>,<country>France</country></aff><aff id="af8"><label>8</label><institution>‘Dr Carol Davila’ Teaching Hospital of Nephrology</institution>,<addr-line>Bucharest</addr-line>,<country>Romania</country></aff><aff id="af9"><label>9</label><addr-line>European Renal Association–European Dialysis and Transplant Association Registry, Department of Medical Informatics, Academic Medical Center</addr-line>,<institution>University of Amsterdam</institution>,<addr-line>Amsterdam</addr-line>,<country>The Netherlands</country></aff><aff id="af10"><label>10</label><addr-line>Section of Nephrology, Department of Organ Transplantation</addr-line>,<institution>Oslo University Hospital Rikshospitalet</institution>,<addr-line>Oslo</addr-line>,<country>Norway</country></aff><aff id="af11"><label>11</label><addr-line>Renal Unit</addr-line>,<institution>Royal Infirmary of Edinburgh</institution>,<addr-line>Edinburgh</addr-line>,<country>UK</country></aff><aff id="af12"><label>12</label><institution>The Scottish Renal Registry</institution>,<addr-line>Glasgow</addr-line>,<country>UK</country></aff><aff id="af13"><label>13</label><addr-line>School of Public Health</addr-line>,<institution>The University of Sydney</institution>,<addr-line>Sydney</addr-line>,<country>Australia</country></aff><aff id="af14"><label>14</label><addr-line>Health Economics Research Centre, Nuffield Department of Population Health</addr-line>,<institution>University of Oxford</institution>,<addr-line>Headington</addr-line>,<country>UK</country></aff><aff id="af15"><label>15</label><addr-line>Department of Palliative Care, Policy & Rehabilitation</addr-line>,<institution>King's College London, Cicely Saunders Institute</institution>,<addr-line>London</addr-line>,<country>UK</country></aff><aff id="af16"><label>16</label><institution>Swedish Renal Registry</institution>,<addr-line>Jönköping</addr-line>,<country>Sweden</country></aff><aff id="af17"><label>17</label><addr-line>Department of Internal Medicine</addr-line>,<institution>Hospital of Helsingborg</institution>,<addr-line>Helsingborg</addr-line>,<country>Sweden</country></aff><aff id="af18"><label>18</label><institution>Dumfries and Galloway Royal Infirmary</institution>,<addr-line>Dumfries</addr-line>,<country>UK</country></aff><aff id="af19"><label>19</label><addr-line>2nd Department of Medicine, 3rd Faculty of Medicine</addr-line>,<institution>Charles University</institution>,<addr-line>Prague</addr-line>,<country>Czech Republic</country></aff><aff id="af20"><label>20</label><institution>Diaverum Renal Services Group</institution>,<addr-line>Lund</addr-line>,<country>Sweden</country></aff><aff id="af21"><label>21</label><institution>National Cancer Registry Ireland</institution>,<addr-line>Cork</addr-line>,<country>Ireland</country></aff><aff id="af22"><label>22</label><addr-line>CHU Nancy, Pôle QSP2</addr-line>,<institution>Epidémiologie et Evaluation Cliniques</institution>,<addr-line>Nancy</addr-line>,<country>France</country></aff><aff id="af23"><label>23</label><institution>Université de Lorraine, Université Paris Descartes</institution>,<addr-line>Nancy</addr-line>,<country>France</country></aff><aff id="af24"><label>24</label><institution>Arbor Research Collaborative for Health</institution>,<addr-line>Ann Arbor, MI</addr-line>,<country>USA</country></aff><aff id="af25"><label>25</label><addr-line>School of Social and Community Medicine</addr-line>,<institution>University of Bristol</institution>,<addr-line>Bristol</addr-line>,<country>UK</country></aff></contrib-group><author-notes><corresp>Correspondence and offprint requests to: Fergus J. Caskey; E-mail: <email>fjcaskey@doctors.org.uk</email></corresp></author-notes><pub-date pub-type="ppub"><month>10</month><year>2015</year></pub-date><pub-date pub-type="epub"><day>16</day><month>5</month><year>2015</year></pub-date><pub-date pub-type="pmc-release"><day>16</day><month>5</month><year>2015</year></pub-date><pmc-comment> PMC Release delay is 0 months and 0 days and was based on the
<volume>30</volume><issue>10</issue><fpage>1605</fpage><lpage>1614</lpage><history><date date-type="received"><day>31</day><month>1</month><year>2015</year></date><date date-type="accepted"><day>13</day><month>4</month><year>2015</year></date></history><permissions><copyright-statement>© The Author 2015. Published by Oxford University Press on behalf of ERA-EDTA</copyright-statement><copyright-year>2015</copyright-year><license license-type="creative-commons" xlink:href="http://creativecommons.org/licenses/by-nc/4.0/"><license-p>This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (<ext-link ext-link-type="uri" xlink:href="http://creativecommons.org/licenses/by-nc/4.0/">http://creativecommons.org/licenses/by-nc/4.0/</ext-link>), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com</license-p></license></permissions><self-uri content-type="pdf" xlink:href="gfv209.pdf"></self-uri><abstract><p>Despite the potential for patient-reported outcome measures (PROMs) and experience measures (PREMs) to enhance understanding of patient experiences and outcomes they have not, to date, been widely incorporated into renal registry datasets. This report summarizes the main points learned from an ERA-EDTA QUEST-funded consensus meeting on how to routinely collect PROMs and PREMs in renal registries in Europe. In preparation for the meeting, we surveyed all European renal registries to establish current or planned efforts to collect PROMs/PREMs. A systematic review of the literature was performed. Publications reporting barriers and/or facilitators to PROMs/PREMs collection by registries were identified and a narrative synthesis undertaken. A group of renal registry representatives, PROMs/PREMs experts and patient representatives then met to (i) share any experience renal registries in Europe have in this area; (ii) establish how patient-reported data might be collected by understanding how registries currently collect routine data and how patient-reported data is collected in other settings; (iii) harmonize the future collection of patient-reported data by renal registries in Europe by agreeing upon preferred instruments and (iv) to identify the barriers to routine collection of patient-reported data in renal registries in Europe. In total, 23 of the 45 European renal registries responded to the survey. Two reported experience in collecting PROMs and three stated that they were actively exploring ways to do so. The systematic review identified 157 potentially relevant articles of which 9 met the inclusion criteria and were analysed for barriers and facilitators to routine PROM/PREM collection. Thirteen themes were identified and mapped to a three-stage framework around establishing the need, setting up and maintaining the routine collection of PROMs/PREMs. At the consensus meeting some PROMs instruments were agreed for routine renal registry collection (the generic SF-12, the disease-specific KDQOL™-36 and EQ-5D-5L to be able to derive quality-adjusted life years), but further work was felt to be needed before recommending PREMs. Routinely collecting PROMs and PREMs in renal registries is important if we are to better understand what matters to patients but it is likely to be challenging; close international collaboration will be beneficial.</p></abstract><kwd-group><kwd>patient-reported measures</kwd><kwd>quality indicators</kwd><kwd>registry</kwd></kwd-group></article-meta></front></pmc><affiliations><list><country><li>Australie</li><li>Belgique</li><li>France</li><li>Irlande (pays)</li><li>Norvège</li><li>Pays-Bas</li><li>Roumanie</li><li>Royaume-Uni</li><li>République tchèque</li><li>Suède</li><li>États-Unis</li></country></list><tree><country name="Royaume-Uni"><noRegion><name sortKey="Breckenridge, Kate" sort="Breckenridge, Kate" uniqKey="Breckenridge K" first="Kate" last="Breckenridge">Kate Breckenridge</name></noRegion><name sortKey="Abbott, Denise" sort="Abbott, Denise" uniqKey="Abbott D" first="Denise" last="Abbott">Denise Abbott</name><name sortKey="Bekker, Hillary L" sort="Bekker, Hillary L" uniqKey="Bekker H" first="Hillary L." last="Bekker">Hillary L. Bekker</name><name sortKey="Caskey, Fergus J" sort="Caskey, Fergus J" uniqKey="Caskey F" first="Fergus J." last="Caskey">Fergus J. Caskey</name><name sortKey="Caskey, Fergus J" sort="Caskey, Fergus J" uniqKey="Caskey F" first="Fergus J." last="Caskey">Fergus J. Caskey</name><name sortKey="Cullen, Ron" sort="Cullen, Ron" uniqKey="Cullen R" first="Ron" last="Cullen">Ron Cullen</name><name sortKey="Gibbons, Elizabeth" sort="Gibbons, Elizabeth" uniqKey="Gibbons E" first="Elizabeth" last="Gibbons">Elizabeth Gibbons</name><name sortKey="Metcalfe, Wendy" sort="Metcalfe, Wendy" uniqKey="Metcalfe W" first="Wendy" last="Metcalfe">Wendy Metcalfe</name><name sortKey="Metcalfe, Wendy" sort="Metcalfe, Wendy" uniqKey="Metcalfe W" first="Wendy" last="Metcalfe">Wendy Metcalfe</name><name sortKey="Morton, Rachael L" sort="Morton, Rachael L" uniqKey="Morton R" first="Rachael L." last="Morton">Rachael L. Morton</name><name sortKey="Murtagh, Fliss E M" sort="Murtagh, Fliss E M" uniqKey="Murtagh F" first="Fliss E. M." last="Murtagh">Fliss E. M. Murtagh</name><name sortKey="Robertson, Susan" sort="Robertson, Susan" uniqKey="Robertson S" first="Susan" last="Robertson">Susan Robertson</name><name sortKey="Van Der Veer, Sabine N" sort="Van Der Veer, Sabine N" uniqKey="Van Der Veer S" first="Sabine N." last="Van Der Veer">Sabine N. Van Der Veer</name></country><country name="Belgique"><noRegion><name sortKey="Van Der Veer, Sabine N" sort="Van Der Veer, Sabine N" uniqKey="Van Der Veer S" first="Sabine N." last="Van Der Veer">Sabine N. Van Der Veer</name></noRegion></country><country name="France"><noRegion><name sortKey="Briancon, Serge" sort="Briancon, Serge" uniqKey="Briancon S" first="Serge" last="Briançon">Serge Briançon</name></noRegion><name sortKey="Speyer, Elodie" sort="Speyer, Elodie" uniqKey="Speyer E" first="Elodie" last="Speyer">Elodie Speyer</name><name sortKey="Speyer, Elodie" sort="Speyer, Elodie" uniqKey="Speyer E" first="Elodie" last="Speyer">Elodie Speyer</name></country><country name="Roumanie"><noRegion><name sortKey="Garneata, Liliana" sort="Garneata, Liliana" uniqKey="Garneata L" first="Liliana" last="Garneata">Liliana Garneata</name></noRegion></country><country name="Pays-Bas"><noRegion><name sortKey="Jager, Kitty J" sort="Jager, Kitty J" uniqKey="Jager K" first="Kitty J." last="Jager">Kitty J. Jager</name></noRegion></country><country name="Norvège"><noRegion><name sortKey="L Nning, Kjersti" sort="L Nning, Kjersti" uniqKey="L Nning K" first="Kjersti" last="L Nning">Kjersti L Nning</name></noRegion></country><country name="Australie"><noRegion><name sortKey="Morton, Rachael L" sort="Morton, Rachael L" uniqKey="Morton R" first="Rachael L." last="Morton">Rachael L. Morton</name></noRegion></country><country name="Suède"><noRegion><name sortKey="Prutz, Karl" sort="Prutz, Karl" uniqKey="Prutz K" first="Karl" last="Prutz">Karl Prutz</name></noRegion><name sortKey="Prutz, Karl" sort="Prutz, Karl" uniqKey="Prutz K" first="Karl" last="Prutz">Karl Prutz</name><name sortKey="Schon, Steffan" sort="Schon, Steffan" uniqKey="Schon S" first="Steffan" last="Schon">Steffan Schon</name><name sortKey="Schon, Steffan" sort="Schon, Steffan" uniqKey="Schon S" first="Steffan" last="Schon">Steffan Schon</name></country><country name="République tchèque"><noRegion><name sortKey="Rychlik, Ivan" sort="Rychlik, Ivan" uniqKey="Rychlik I" first="Ivan" last="Rychlik">Ivan Rychlik</name></noRegion></country><country name="Irlande (pays)"><noRegion><name sortKey="Sharp, Linda" sort="Sharp, Linda" uniqKey="Sharp L" first="Linda" last="Sharp">Linda Sharp</name></noRegion></country><country name="États-Unis"><noRegion><name sortKey="Tentori, Francesca" sort="Tentori, Francesca" uniqKey="Tentori F" first="Francesca" last="Tentori">Francesca Tentori</name></noRegion></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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