Data Access Committee

Data Access Committee of EuRR-Bone is shared with EuRRECa and resembles both registries. Our data access policy is alligned with that of EuRRECa .

ChairOlaf Hiort, University of Lübeck
Co-ChairAlberto Pereira, Leiden University Medical Centre
EuRR-Bone PI Natasha Appelman-Dijkstra, Leiden University Medical Centre
EuRRECa PIS. Faisal Ahmed, University of Glasgow Jillian Bryce, University of Glasgow
Project Manager EuRRECaJillian Bryce, University of Glasgow
Quality EvaluationLuca Persani, Istituto Auxologico Italiano Milan & Domenica Taruscio, Istituto Superiore di Sanità Rome
Core OutcomesOlaf Dekkers, Leiden University Medical Centre
Patient, Parent & EthicsMartine Cools, Ghent University & Arlene Smyth, Office for Rare Conditions, Glasgow
ESEJerome Bertherat, Université Paris Descartes, Paris
e-PAG ERN BONDTenna Toft
ERN-BONDLuca Sangiorgi, Sostieni la ricerca dell’IRCCS Istituto Ortopedico Rizzoli
ESPEErica van den Akker, Erasmus Medical Centre, Rotterdam
ECTSM.Carola Zillikens, Erasmus Medical Center, Rotterdam

To Co-opt from Project Governing Board Depending On The Theme

Roland ChapurlatSkeletal Dysplasia Expert Working Group
Thomas DanneEuRRECa Diabetes Expert Working Group, Children’s Hosp Auf Der Bult Hannover
Mehul DattaniEuRRECa Pituitary Expert Working Group, Great Ormond Street Hospital London
Agnès LinglartEuRRECa Ca & Phos Expert Working Group, Assistance Publique–Hopitaux de Paris
Irène NetchineEuRRECa Growth Expert Working Group, Assistance Publique–Hopitaux de Paris
Anna NordenströmEuRRECa Sex Development Expert Working Group Karolinska Univ Hosp Stockholm
Attila PatócsEuRRECa Genetic Tumours Expert Working Group Semmelweis University Budapest
Nicole ReischEuRRECa Adrenal Expert Working Group Ludwig-Maximilians-University Munich
Zdeněk ŠumnikEuRRECa Diabetes Expert Working Group, University Hospital Motol Prague
Edward VisserEuRRECa Thyroid Expert Working Group, Erasmus Medical Centre Rotterdam