Data Access Committee

Data Access Committee:

Chair Olaf Hiort, University of Lübeck
Co-Chair Alberto Pereira, Leiden University Medical Centre
Principal Investigator S. Faisal Ahmed, University of Glasgow
Project Manager Jillian Bryce, University of Glasgow
ESPE Representative Erica van der Akker, Erasmus Medical Centre, Rotterdam
ESE Representative Jerome Bertherat, Université Paris Descartes, Paris
Quality Evaluation Luca Persani, Istituto Auxologico Italiano Milan
Quality Evaluation Domenica Taruscio, Istituto Superiore di Sanità Rome
Core Outcomes Olaf Dekkers, Leiden University Medical Centre
Patient, Parent & Ethics Martine Cools, Ghent University
Patient, Parent & Ethics Arlene Smyth, Office for Rare Conditions, Glasgow

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

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

Core Registry Data Access Policy v1.2-310519

Future Composition Of The Committee:

The current composition of the Data Access Committee reflects the Project Governing Board of the EuRRECa project which is funded by European Union’s Health Programme (2014-2020) and also supported by the European Reference Network on Rare Endocrine Conditions (Endo-ERN), European Society of Endocrinology (ESE) and the European Society for Paediatric Endocrinology (ESPE). On completion of the project, the tenure of the Committee members will become fixed to a limited term and the composition of the Committee will continue to reflect its principal stakeholders and supporters.