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

• Ana Luisa Priego Zurita,
• Agnès Linglart,
• Inês Alves,
• Renata Simona Auriemma,
• Manila Boarini,
• Jillian Bryce,
• Luisa DeSanctis,
• Diana-Alexandra Ertl,
• Hoong-Wei Gan,
• Corinna Grasemann,
• Wolfgang Högler,
• M. Kassim Javaid,
• Klaus Mohnike,
• Marina Mordenti,
• Adalbert Raimann,
• Luca Sangiorgi,
• Marco Roos,
• Rebecca Skarberg,
• Ondrej Soucek,
• Judit Toke,
• Erica van den Akker,
• Almudena Vicente,
• Ahmed S. Faisal,
• Natasha Appelman-Dijkstra

Affiliations

Ana Luisa Priego Zurita

Leiden University Medical Center, Endocrinology, Leiden, Netherlands; Corresponding author.

Agnès Linglart

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

Inês Alves

ANDO Portugal, ERN Bond ePAG, Evora, Portugal

Renata Simona Auriemma

Azienda Ospedaliera Universitaria ''Federico II'', Endocrinology, Napoli, Italy

Manila Boarini

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

Jillian Bryce

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

Luisa DeSanctis

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

Diana-Alexandra Ertl

Medizinische Universität Wien, University Clinic for Pediatrics and Adolescent Medicine, Wien, Austria

Hoong-Wei Gan

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

Corinna Grasemann

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

Wolfgang Högler

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

M. Kassim Javaid

University of Oxford, Nuffield Department of Orthopaedics- Rheumatology & Musculoskeletal Sciences, Oxford, United Kingdom

Klaus Mohnike

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

Marina Mordenti

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

Adalbert Raimann

Medizinische Universität Wien, University Clinic for Pediatrics and Adolescent Medicine, Wien, Austria

Luca Sangiorgi

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

Marco Roos

Leiden University Medical Center, Human Genetics, Leiden, Netherlands

Rebecca Skarberg

OIFE, ERN Bond ePAG, Oslo, Norway

Ondrej Soucek

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

Judit Toke

Semmelweis Egyetem, Department of Internal Medicine, Budapest, Hungary

Erica van den Akker

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

Almudena Vicente

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

Ahmed S. Faisal

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

Natasha Appelman-Dijkstra

Leiden University Medical Center, Endocrinology, Leiden, Netherlands