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P194 : The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone): First year experience of the use of an e-reporting tool

Researchers

Presenter

  • Ana Luisa Priego Zurita

Principal Investigators

  • Agns Linglart

  • Ins Alves

  • Renata Simona Auriemma

  • Jillian Bryce

  • Diana-Alexandra Ertl

  • Hoong-Wei Gan

  • Corinna Grasemann

  • Wolfgang Hgler

  • M. Kassim Javaid

  • Klaus Mohnike

  • Adalbert Raimann

  • Luca Sangiorgi

  • Natasha Appelman-Dijkstra

Medical Centers

  • Leiden University Medical Centre, Medical Psychology, Leiden, Netherlands

  • Assistance Publique - Hopitaux de Paris, Department of Pediatric Endocrinology and Diabetology for Children, Paris, France

  • ANDO Portugal, ERN Bond ePAG, Evora, Portugal

  • Azienda Ospedaliera Universitaria "Federico II", Endocrinology, Napoli, Italy

  • IRCCS Istituto Ortopedico Rizzoli, Department of Medical Genetics and Rare Orthopedic Diseases and CLIBI Laboratory, Bologna, Italy

  • University of Glasgow, Developmental Endocrinology Research Group, Glasgow, United Kingdom

  • Azienda Ospedaliero Universitaria Citt脿 della Salute e della Scienza di Torino, Department of Public Health and Pediatrics, Torino, Italy

  • Medizinische Universit盲t Wien, University Clinic for Pediatrics and Adolescent Medicine, Wien, Austria

  • Great Ormond Street Hospital, Pediatric Endocrinology & Diabetes, London, United Kingdom

  • Ruhr-University Bochum, Department of Pediatrics- St. Josef-Hospital, Bochum, Germany

  • Johannes Kepler University Linz and Kepler University Hospital, Department of Pediatrics and Adolescent Medicine, Linz, Austria

  • Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, Oxford, United Kingdom

  • Otto-von-Guericke-Universitaet Magdeburg, Department of Pediatrics, Magdeburg, Germany

  • Leiden University Medical Centre, Leiden, Netherlands

  • OIFE, ERN Bond ePAG, Oslo, Norway

  • Fakultni Nemocnice v Motole, Department of Pediatrics, Prague, Czech Republic

  • Semmelweis Egyetem, Department of Internal Medicine, Budapest, Hungary

  • Erasmus University Medical Center, Division of Pediatric Endocrinology- Department of Pediatrics- Sophia Children's Hospital, Rotterdam, Netherlands

  • Hospital Virgen de la Salud, Department of Endocrinology and Nutrition, Toledo, Spain

Locations

  • France

  • Portugal

  • Italy

  • United Kingdom

  • Germany

  • Spain

Companies

  • N/A

Study Components

Therapeutic Area

  • N/A

Disease

  • N/A

Biomarkers

  • N/A

Drug/Treatment

  • N/A

Outcome

  • N/A

Study Design

  • N/A

Phase

  • NA

Study Id's

  • N/A

Sponsors

  • N/A

Result

  • N/A

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