Data Access Committee

Data Access Committee

The overall aim of the Data Access Committee (DAC) is to promote the wider use of the data that are being collected in the EuRREB (EuRRECa/EuRR-Bone) Core Registry and e-REC through a transparent and simple approach.

Name Organisation Role / Representing
Olaf Dekkers Leiden University Medical Center Data access committee chair
Faisal Ahmed University of Glasgow Leiden University Medical Center EuRRECa PI
Natasha Appelman-Dijkstra Leiden University Medical Center EuRR-Bone PI
Agnès Linglart Assistance Publique–Hopitaux de Paris Chair of Steering Committee
Pietro Maffei Azienda Ospedaliera di Padova Endo-ERN
Olaf Hiort University of Lübeck ESPE
Carola Zillikens Erasmus Medical Center, Rotterdam ECTS
Kristi Alexandraki National and Kapodistrian University of Athens ESE
Tess de Rooij Leiden University Medical Center Project Manager
Arlene Smyth Office for Rare Conditions, Glasgow and Turner Syndrome Support Society, UK Endo-ERN ePAG
Tenna Toft XLH Alliance ERN BOND ePAG
Gabriele Hartmann Medical University of Vienna Bone Expert
Roland Chapurlat INSERM Bone Expert