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 .

Chair	Olaf Hiort, University of Lübeck
Co-Chair	Alberto Pereira, Leiden University Medical Centre
EuRR-Bone PI	Natasha Appelman-Dijkstra, Leiden University Medical Centre
EuRRECa PI	S. Faisal Ahmed, University of Glasgow Jillian Bryce, University of Glasgow
Project Manager EuRRECa	Jillian Bryce, University of Glasgow
Quality Evaluation	Luca Persani, Istituto Auxologico Italiano Milan & Domenica Taruscio, Istituto Superiore di Sanità Rome
Core Outcomes	Olaf Dekkers, Leiden University Medical Centre
Patient, Parent & Ethics	Martine Cools, Ghent University & Arlene Smyth, Office for Rare Conditions, Glasgow
ESE	Jerome Bertherat, Université Paris Descartes, Paris
e-PAG ERN BOND	Tenna Toft
ERN-BOND	Luca Sangiorgi, Sostieni la ricerca dell’IRCCS Istituto Ortopedico Rizzoli
ESPE	Erica van den Akker, Erasmus Medical Centre, Rotterdam
ECTS	M.Carola Zillikens, Erasmus Medical Center, Rotterdam

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

Roland Chapurlat	Skeletal Dysplasia Expert Working Group
Thomas Danne	EuRRECa Diabetes Expert Working Group, Children’s Hosp Auf Der Bult Hannover
Mehul Dattani	EuRRECa Pituitary Expert Working Group, Great Ormond Street Hospital London
Agnès Linglart	EuRRECa Ca & Phos Expert Working Group, Assistance Publique–Hopitaux de Paris
Irène Netchine	EuRRECa Growth Expert Working Group, Assistance Publique–Hopitaux de Paris
Anna Nordenström	EuRRECa Sex Development Expert Working Group Karolinska Univ Hosp Stockholm
Attila Patócs	EuRRECa Genetic Tumours Expert Working Group Semmelweis University Budapest
Nicole Reisch	EuRRECa Adrenal Expert Working Group Ludwig-Maximilians-University Munich
Zdeněk Šumnik	EuRRECa Diabetes Expert Working Group, University Hospital Motol Prague
Edward Visser	EuRRECa Thyroid Expert Working Group, Erasmus Medical Centre Rotterdam