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The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes.
Ali, Salma R; Bryce, Jillian; Tan, Li En; Hiort, Olaf; Pereira, Alberto M; van den Akker, Erica L T; Appelman-Dijkstra, Natasha M; Bertherat, Jerome; Cools, Martine; Dekkers, Olaf M; Kodra, Yllka; Persani, Luca; Smyth, Arelene; Smythe, Christopher; Taruscio, Domenica; Ahmed, S Faisal.
Afiliação
  • Ali SR; Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow G51 4TF, UK.
  • Bryce J; Office for Rare Conditions, University of Glasgow, Glasgow G51 4TF, UK.
  • Tan LE; Office for Rare Conditions, University of Glasgow, Glasgow G51 4TF, UK.
  • Hiort O; Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow G51 4TF, UK.
  • Pereira AM; Department of Paediatrics and Adolescent Medicine, Division of Paediatric Endocrinology and Diabetes, University of Lübeck, 23562 Lübeck, Germany.
  • van den Akker ELT; Department of Medicine, Division of Endocrinology, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands.
  • Appelman-Dijkstra NM; Department of Pediatrics, Division of Pediatric Endocrinology, Erasmus MC-Sophia Children's Hospital, 3000 CB Rotterdam, The Netherlands.
  • Bertherat J; Obesity Center CGG, Erasmus MC-Sophia Children's Hospital, 3000 CB Rotterdam, The Netherlands.
  • Cools M; Department of Medicine, Division of Endocrinology, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands.
  • Dekkers OM; Reference Center for Rare Adrenal Disorders, Cochin Hospital, Université de Paris, 75006 Paris, France.
  • Kodra Y; Department of Internal Medicine and Paediatrics, Ghent University, 9000 Ghent, Belgium.
  • Persani L; Department of Paediatric Endocrinology, Ghent University Hospital, 9000 Ghent, Belgium.
  • Smyth A; Department of Medicine, Division of Endocrinology, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands.
  • Smythe C; Departments of Medicine & Clinical Epidemiology, Leiden University Medical Centre, 2300 RC Leiden, The Netherlands.
  • Taruscio D; National Centre for Rare Diseases, Istituto Superiore di Sanità, 00161 Rome, Italy.
  • Ahmed SF; Division of Endocrine and Metabolic Diseases, Istituto Auxologico Italiano, 20145 Milan, Italy.
Int J Environ Res Public Health ; 17(23)2020 11 25.
Article em En | MEDLINE | ID: mdl-33255540
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Sistema de Registros / Doenças Raras / Políticas Tipo de estudo: Guideline / Prognostic_studies Limite: Humans País/Região como assunto: Europa Idioma: En Ano de publicação: 2020 Tipo de documento: Article
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Sistema de Registros / Doenças Raras / Políticas Tipo de estudo: Guideline / Prognostic_studies Limite: Humans País/Região como assunto: Europa Idioma: En Ano de publicação: 2020 Tipo de documento: Article