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.

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 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 ModuleMTGYearN patients in CoreOutcomes completedStudy Group LeadActive Study
Langerhans Cell HistiocytosisSys202500Polyzois MakrasLangerhans Cell Histiocytosis
Non-Langerhans Cell HistiocytosisSys202500Polyzois MakrasUnder development
Chronic Non-bacterial OsteitisSys202500Liesbeth WinterUnder development
Pediatric Differentiated Thyroid CarcinomaMTG820246630Hanneke van Santen / Sarah ClementNatural History of Ped-DTC
Rare HypophosphatemiaMTG220238461Agnès Linglart / Diana-Alexandra Ertl-
MelorheostosisBD20232018Martine Cohen-SolalNatural History of Melorheostosis
Rare ObesityMTG520236810Erica van den AkkerNatural History of Rare Obesity
Gender IncongruenceMTG72023152159Martine Cools / Silvia CianciaCurrent status of healthcare for transgender adolescents across Europe
Achondroplasia
BD2022174125Klaus Mohnike / Ines AlvesNatural History of Achondroplasia
Fibrous Dysplasia / McCune Albright Syndrome (FD/MAS)BD20226421406Natasha Appelman-DijkstraNatural History of FD/MAS
Osteogenesis ImperfectaBD202210726Wolfgang Högler-
Parathyroid CarcinomaMTG220221415Maria Luisa BrandiNatural History of Parathyroid Carcinoma
iPPSD/PHPMTG220213211Agnès Linglart / Diana-Alexandra ErtlNatural History of iPPSD/PHP
Pituitary TumourMTG620217391114Alberto Pereira1. Pituitary Tumours Epidemiological Surveillance
2. PANOMEN Study
3. Transcription Factors