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Recommendations for Improving the Quality of Rare Disease Registries.
Kodra, Yllka; Weinbach, Jérôme; Posada-de-la-Paz, Manuel; Coi, Alessio; Lemonnier, S Lydie; van Enckevort, David; Roos, Marco; Jacobsen, Annika; Cornet, Ronald; Ahmed, S Faisal; Bros-Facer, Virginie; Popa, Veronica; Van Meel, Marieke; Renault, Daniel; von Gizycki, Rainald; Santoro, Michele; Landais, Paul; Torreri, Paola; Carta, Claudio; Mascalzoni, Deborah; Gainotti, Sabina; Lopez, Estrella; Ambrosini, Anna; Müller, Heimo; Reis, Robert; Bianchi, Fabrizio; Rubinstein, Yaffa R; Lochmüller, Hanns; Taruscio, Domenica.
Afiliação
  • Kodra Y; National Centre for Rare Diseases, Istituto Superiore di Sanità, 00162 Rome, Italy. yllka.kodra@iss.it.
  • Weinbach J; RaDiCo, (The French National Programme on Rare Disease Cohorts), Inserm-UMR S933, National Institute of Health and Medical Research, Hôpital Trousseau, 75018 Paris, France. jerome.weinbach@radico.fr.
  • Posada-de-la-Paz M; Institute of Rare Diseases Research, ISCIII, RDR and CIBERER, 28029 Madrid, Spain. mposada@isciii.es.
  • Coi A; Institute of Clinical Physiology, National Research Council, 56124 Pisa, Italy. alessio.coi@ifc.cnr.it.
  • Lemonnier SL; Fondazione Toscana "Gabriele Monasterio" (FTGM), 56124 Pisa, Italy. alessio.coi@ifc.cnr.it.
  • van Enckevort D; Patient Advisory Council of RD Connect and Vaincre la Mucoviscidose the French Cystic Fibrosis Patient Organization, 75013 Paris, France. llemonnier@vaincrelamuco.org.
  • Roos M; Department of Genetics, University Medical Centre Groningen (UMCG), University of Groningen, 9700 RB Groningen, The Netherlands. d.van.enckevort@rug.nl.
  • Jacobsen A; Leiden University Medical Center, 2333 ZA Leiden, The Netherlands. m.roos@lumc.nl.
  • Cornet R; Leiden University Medical Center, 2333 ZA Leiden, The Netherlands. annika.jacobsen.86@gmail.com.
  • Ahmed SF; Amsterdam UMC, University of Amsterdam, Medical Informatics, Amsterdam Public Health Research Institute, 1105 AZ Amsterdam, The Netherlands. r.cornet@amc.uva.nl.
  • Bros-Facer V; Office for Rare Conditions, Royal Hospital for Children, University of Glasgow, Glasgow G51 4TF, UK. faisal.ahmed@glasgow.ac.uk.
  • Popa V; Patient Advisory Council of RD-Connect and EURORDIS-Rare Diseases Europe, 75014 Paris, France. virginie.bros-facer@eurordis.org.
  • Van Meel M; Patient Advisory Council of RD Connect and MCT8-AHDS Foundation, Oklahoma, OK 74464, USA. veronica_maria_popa@yahoo.com.
  • Renault D; Patient Advisory Council of RD Connect and NephcEurope Foundation, 2411 DW Bodegraven, The Netherlands. mvanmeel@casema.nl.
  • von Gizycki R; Patient Advisory Council of RD Connect and FEDERG, 1200 Brussels, Belgium. daniel.renault34@orange.fr.
  • Santoro M; Patient Advisory Council of RD Connect and PRO RETINA Deutschland, 53113 Bonn, Germany. rainald.vongizycki@charite.de.
  • Landais P; Institute of Clinical Physiology, National Research Council, 56124 Pisa, Italy. msantoro@ifc.cnr.it.
  • Torreri P; Fondazione Toscana "Gabriele Monasterio" (FTGM), 56124 Pisa, Italy. msantoro@ifc.cnr.it.
  • Carta C; RaDiCo, (The French National Programme on Rare Disease Cohorts), Inserm-UMR S933, National Institute of Health and Medical Research, Hôpital Trousseau, 75018 Paris, France. paul.landais@umontpellier.fr.
  • Mascalzoni D; EA2415 Clinical Research Institute, Montpellier University, 34093 Montpellier, France. paul.landais@umontpellier.fr.
  • Gainotti S; National Centre for Rare Diseases, Istituto Superiore di Sanità, 00162 Rome, Italy. paola.torreri@iss.it.
  • Lopez E; National Centre for Rare Diseases, Istituto Superiore di Sanità, 00162 Rome, Italy. claudio.carta@iss.it.
  • Ambrosini A; Department of Public Health and Caring Sciences, Centre for Research Ethics & Bioethics (CRB) Uppsala University, 75122 Uppsala, Sweden. deborah.mascalzoni@crb.uu.se.
  • Müller H; Bioethics Unit, Office of the President, Istituto Superiore di Sanità, 00162 Rome, Italy. sabina.gainotti@iss.it.
  • Reis R; Institute of Rare Diseases Research, ISCIII, RDR and CIBERER, 28029 Madrid, Spain. elopez@isciii.es.
  • Bianchi F; Fondazione Telethon, 20129 Milan, Italy. aambrosini@telethon.it.
  • Rubinstein YR; Diagnostic and Research Center for Molecular BioMedicine, Medical University of Graz, 8010 Graz, Austria. heimo.mueller@medunigraz.at.
  • Lochmüller H; Diagnostic and Research Center for Molecular BioMedicine, Medical University of Graz, 8010 Graz, Austria. robert.reihs@medunigraz.at.
  • Taruscio D; Institute of Clinical Physiology, National Research Council, 56124 Pisa, Italy. fabrizio.bianchi@ifc.cnr.it.
Int J Environ Res Public Health ; 15(8)2018 08 03.
Article em En | MEDLINE | ID: mdl-30081484
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Contexto em Saúde: 1_ASSA2030 Problema de saúde: 1_sistemas_informacao_saude Assunto principal: Sistema de Registros / Doenças Raras / Melhoria de Qualidade Tipo de estudo: Guideline Limite: Humans País/Região como assunto: Europa Idioma: En Revista: Int J Environ Res Public Health Ano de publicação: 2018 Tipo de documento: Article País de afiliação: Itália
Texto completo
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Contexto em Saúde: 1_ASSA2030 Problema de saúde: 1_sistemas_informacao_saude Assunto principal: Sistema de Registros / Doenças Raras / Melhoria de Qualidade Tipo de estudo: Guideline Limite: Humans País/Região como assunto: Europa Idioma: En Revista: Int J Environ Res Public Health Ano de publicação: 2018 Tipo de documento: Article País de afiliação: Itália