Working Groups and Study Groups
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, and the Working Group will be dismantled.
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 an overview of our active Working Groups, please take a look here.
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.
Overview of Active Studies
| Condition Specific Module | MTG | Year | Active countries / Active centres | Group Lead | Active Study | ||
|---|---|---|---|---|---|---|---|
| Women's Reproductive Health | All | 2026 | 0/0 | Tim Korevaar / Natasha Appelman-Dijkstra | No active study yet | ||
| Hypoparathyroidism | MTG2 | 2026 | 0/0 | Maria Yavropolou / Corinna Grasemann / Eva Kassi | No active study yet | ||
| Multiple Andocrine Neoplasia type 1 (MEN-1) | MTG4 | 2025 | 0/0 | Gerlof Valk / Maria Luisa Brandi | Natural History of MEN-1 | ||
| Chronic Non-bacterial Osteitis (CNO) | Sys | 2025 | 2/2 | Liesbeth Winter | No active study yet | ||
| Langerhans Cell Histiocytosis | Sys | 2025 | 2/2 | Polyzois Makras | Natural History of endocrine and bone complications of LCH | ||
| Non-Langerhans Cell Histiocytosis | Sys | 2025 | 2/2 | Polyzois Makras | No active study yet | ||
| Pediatric Differentiated Thyroid Carcinoma | MTG8 | 2024 | 8/12 | Hanneke van Santen / Sarah Clement | Natural History of Ped-DTC | ||
| Rare Hypophosphatemia | MTG2 | 2023 | 5/5 | Agnès Linglart / Diana-Alexandra Ertl | No active study yet | ||
| Melorheostosis | BD | 2023 | 2/2 | Martine Cohen-Solal | Natural History of Melorheostosis | ||
| Rare Obesity | MTG5 | 2023 | 2/2 | Erica van den Akker | Natural History of Rare Obesity | ||
| Gender Incongruence | MTG7 | 2023 | 4/5 | Martine Cools / Silvia Ciancia | Current status of healthcare for transgender adolescents across Europe | ||
| Achondroplasia | BD | 2022 | 4/4 | Klaus Mohnike / Ines Alves | Natural History of Achondroplasia | ||
| Fibrous Dysplasia / McCune Albright Syndrome (FD/MAS) | BD | 2022 | 10/12 | Natasha Appelman-Dijkstra | Natural History of FD/MAS | ||
| Osteogenesis Imperfecta | BD | 2022 | 11/13 | Natasha Appelman-Dijkstra / Wolfgang Hogler / Guus Janus | First outcomes of the European registries on OI | ||
| Parathyroid Carcinoma | MTG2 | 2022 | 3/3 | Maria Luisa Brandi | Natural History of Parathyroid Carcinoma | ||
| iPPSD/PHP | MTG2 | 2021 | 3/4 | Agnès Linglart / Diana-Alexandra Ertl | Natural History of iPPSD/PHP | ||
| Pituitary Tumour | MTG6 | 2021 | 6/9 | Alberto Pereira* Gerald Raverot** *1,2,3,4 **4 | 1. Pituitary Tumours Epidemiological Surveillance 2. PANOMEN Study 3. Transcription Factors 4. The Clinical Usefulness of the Trouillas Classification |
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