Data Access Committee of EuRR-Bone is shared with EuRRECa and resembles both registries.
Chair | Olaf Hiort, University of Lübeck |
Co-Chair | Alberto Pereira, Leiden University Medical Centre |
EuRR-Bone | Natasha Appelman-Dijkstra, Leiden University Medical Centre |
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 |
EuRRECa | S. Faisal Ahmed, University of Glasgow |
ESE | Jerome Bertherat, Université Paris Descartes, Paris |
e-PAG ERN BOND | TBD |
ERN-BOND | Luca Sangiorgi, Sostieni la ricerca dell’IRCCS Istituto Ortopedico Rizzoli |
ESPE | Erica van den Akker, Erasmus Medical Centre, Rotterdam |
ECTS | TBD |
To Co-opt from Project Governing Board Depending On The Theme
TBD | Skeletal Dysplasia Expert Working Group |
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 |