Overview of Active Studies
Working Groups
Working Groups are composed of experts from different disciplines including patient representatives. Each groups brings together their expertise to develop one of our Condition Specific Modules. Once the module is developed, the module is available for different Study Groups to perform a study with data from the module.
If you would like to join or start a Working Group please contact us at: registries@lumc.nl. Please take a look at our Working Group remit for more information. For our previous Working Groups, please take a look at this overview.
Study Groups
Study Groups are composed of experts from different disciplines including patient representatives. Each group brings together their expertise to accomplish its objectives to perform a study with the different Condition Specific Modules.
If you would like to start a Study Group please fill out a Data Request Form. Please take a look at our Study Group remit for more information. For results of our previous Study Groups, please take a look at our Publications.
| Condition-specific module | MTG | Year | N patients in Core | Outcomes completed | Study Group Lead | Active study |
| iPPSD/PHP | MTG2 | 2021 | 32 | 11 | Agnès Linglart / Diana-Alexandra Ertl | Natural History of iPPSD/PHP |
| Pituitary Tumour | MTG6 | 2021 | 739 | 1114 | Alberto Pereira | 1. Epidemiological Surveillance of Pituitary Tumours within Endo-ERN. 2. The Clinical Usefulness of the PANOMEN 3 Grade Score. 3. Cell-lineage specific differences in presentation and outcomes of non-functioning pituitary adenomas – multicentre study in patients seen at Endo-ERN reference centres. |
| Achondroplasia | BD | 2022 | 174 | 125 | Klaus Mohnike / Ines Alves | Natural History of Achondroplasia |
| Fibrous Dysplasia / McCune Albright Syndrome (FD/MAS) | BD | 2022 | 642 | 1406 | Natasha Appelman-Dijkstra | Natural History of FD/MAS |
| Osteogenesis Imperfecta (OI) | BD | 2022 | 107 | 26 | Wolfgang Högler | |
| Parathyroid Carcinoma | MTG2 | 2022 | 14 | 15 | Maria Luisa Brandi | Natural History of Parathyroid Carcinoma |
| Rare Hypophosphatemia | MTG2 | 2023 | 84 | 61 | Agnès Linglart / Diana-Alexandra Ertl | |
| Melorheostosis | BD | 2023 | 20 | 18 | Martine Cohen-Solal | Natural History of Melorheostosis |
| Rare Obesity | MTG5 | 2023 | 68 | 10 | Erica van den Akker | Natural History of Rare Obesity |
| Gender Incongruence | MTG7 | 2023 | 152 | 159 | Martine Cohen-Solal / Silvia Ciancia | Current status of healthcare for transgender adolescents across Europe |
| Pediatric Differentiated Thyroid Carcinoma | MTG8 | 2024 | 66 | 30 | Hanneke van Santen / Sarah Clement | Under development |
| Langerhans Cell Histiocytosis | Sys | 2025 | 0 | 0 | Polyzois Makras | Under development |
| Chronic Non-bacterial Osteitis | Sys | 2025 | 0 | 0 | Liesbeth Winter | Under development |
Visiting address
Leiden University Medical Center
Department of Endocrinology
Room C7-57, route 222
Albinusdreef 2
2333 ZA Leiden, the Netherlands
Join our newsletter
Follow us
Privacy policy | Disclaimer | Copyright © 2025 EuRREB | All rights reserved | Website made by Sabine Geerlings