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. 

Studies Overview

StudyStartEndPI & Members SG*MTG*Condition Specific ModuleStatusOutputs
HypoCaVD NEW!2026-09Sep 20262031-09Sep 2031Maria Yavropoulou &Members SGMTG2Hypoparathyroidism
Open
Natural History of Hypoparathyroidism NEW!2026-07Jul
2026		2031-07Jul
2031		Femke van Haalen
&Members SG
MTG2Hypoparathyroidism
Open
Natural History Melorheostosis2024-04Apr 20242029-04Apr 2029Martine Cohen-Solal
&Members SG		BDMelorheostosisOpenDOI: 10.1186/s13023-025-03862-6
Natural History Achondroplasia2024-02Feb 20242029-02Feb 2029Klaus Mohnike
&Members SG		BDAchondroplasia
Open
Natural History FD/MAS2022-10Oct 20222027-01Jan 2027Natasha Appelman-Dijkstra
&Members SG		BD Fibrous Dysplasia / McCune Albright Syndrome (FD/MAS)OpenDOI: 10.1007/s00223-025-01379-5
First outcomes OI2026-01Jan 20262031-01Jan 2031Natasha Appelman-Dijkstra
&Members SG		BDOsteogenesis ImperfectaOpen
Natural History Parathyroid Carcinoma2022-12Dec 20222027-12Dec 2027Maria Luisa Brandi
&Members SG		MTG2Parathyroid CarcinomaOpen
Natural History iPPSD/PHP2023-03Mar 20232028-03Mar 2028Agnès Linglart
&Members SG		MTG2iPPSD/PHPOpen
Natural History MEN-12025-12Dec 20252030-12Dec 2030Medard van den Broek
&Members SG		MTG4 Multiple Andocrine Neoplasia type 1 (MEN-1)Open
Natural History of Rare Obesity2023-08Aug 20232028-08Aug 2028Erica van den Akker
&Members SG		MTG5Rare ObesityOpen
Panomen Study2025-03Mar 20252026-11Nov 2026Alberto Pereira
&Members SG		MTG6Pituitary TumourOpen
Pituitary Tumours Epidemiological Surveillance
2025-01Jan 20252025-09 Sep 2025Alberto Pereira
&Members SG		MTG6Pituitary TumourClosed
Transcription Factors2025-03Mar 20252026-11Nov 2026Alberto Pereira
&Members SG		MTG6Pituitary TumourOpen
Clinical Usefulness Trouillas Classification
2025-12Dec 20252028-12Dec 2028Gérald Raverot
&Members SG		MTG6Pituitary TumourOpen
Current status healthcare transgender adolescents2024-03Mar 20242029-03Mar 2029Silvia Ciancia
&Members SG		MTG7Gender IncongruenceOpenDOI: 10.1530/EC-25-0401
Natural History Ped-DTC2025-03Mar 20252030-03Mar 2030Sarah Clement
&Members SG		MTG8Pediatric Differentiated Thyroid CarcinomaOpenDOI: 10.1530/ec-22-0306

*SG: Study Group *MTG: Main Thematic Group, MTG1: Adrenal, MTG2: Calcium & Phosphate, MTG3: Genetic Disorders of Glucose & Insulin Homeostasis, MTG4: Genetic Endocrine Tumour Syndromes, MTG5: Growth & Genetic Obesity Syndromes, MTG6: Hypothalamic & Pituitary Conditions, MTG7: Sex Development & Maturation, MTG8: Thyroid, BD: Bone Dysplasia.