Condition Specific Modules

Condition Specific Modules (CSM) result from the work of dedicated multidisciplinary Working Groups. Condition-specific datasets cover aspects of specific conditions such as diagnosis, therapy, and monitoring. They are built into the Core Registry platform for dynamic and longitudinal collection of data. These data can be entered by clinicians and patients.

Want to develop a Condition Specific Module? Please use this Application Form. Have you already created a Condition Specific Module, but want to make changes to the module, please use the Module Changes Form. For minor changes to an existing module you can contact us at registries@lumc.nl.

Once a Condition Specific Module is developed, the module is available for different Study Groups to perform a study with data from the module. Please find which Condition Specific Modules we are currently developing here.

If you would like to join or start a Working or Study Group please contact us at: registries@lumc.nl. 

CSM Overview

Condition Specific ModuleMTG*Year of launchLead & Members WG*Active Countries/ CentresActive or previous studies
Hypoparathyroidism NEW!MTG22026Natasha Appelman-Dijkstra
&Members WG		4/4Natural History of Hypoparathyroidism
Women's Reproductive Health NEW!All2026Tim Korevaar / Natasha Appelman-Dijkstra
&Members WG		0/0No study yet
Chronic Non-bacterial Osteitis (CNO)Sys2025Liesbeth Winter
&Members WG		3/3No study yet
Langerhans Cell HistiocytosisSys2025Polyzois Makras
&Members WG		2/2No study yet
Multiple Endocrine Neoplasia type 1 (MEN-1)MTG42025Gerlof Valk / Maria Luisa Brandi
&Members WG		0/0Natural History of MEN-1
Non-Langerhans Cell HistiocytosisSys2025Polyzois Makras
&Members WG		2/2No study yet
Pediatric Differentiated Thyroid CarcinomaMTG82024Hanneke van Santen
&Members WG		28/15Natural History of Ped-DTC
Gender IncongruenceMTG72023Silvia Ciancia
&Members WG		4/5Current status of healthcare for transgender adolescents across Europe
MelorheostosisBD2023Martine Cohen-Solal
&Members WG		2/2Natural History of Melorheostosis
Rare HypophosphatemiaMTG22023Agnès Linglart
&Members WG		5/5No study yet
Rare ObesityMTG52023Erica van den Akker
&Members WG		2/2Natural History of Rare Obesity
Achondroplasia
BD2022Klaus Mohnike
&Members WG
4/4Natural History of Achondroplasia
Fibrous Dysplasia / McCune Albright Syndrome (FD/MAS)BD2022Natasha Appelman-Dijkstra
&Members WG		10/12Natural History of FD/MAS
Osteogenesis ImperfectaBD2022Wolfgang Högler
&Members WG		11/13First outcomes of the European registries on OI
Parathyroid CarcinomaMTG22022Maria Luisa Brandi
&Members WG		3/3Natural History of Parathyroid Carcinoma
iPPSD/PHPMTG22021Agnès Linglart
&Members WG		3/4Natural History of iPPSD/PHP
Pituitary TumourMTG62021Alberto Pereira
&Members WG		20/121. Panomen Study
2. Epidemiological Surveillance Pituitary Tumours
3. Clinical Usefulness of the Trouillas Classification
4. Transcription Factors

*WG: Working 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, Sys: Systemic & Rheumatological.

*Some of these Condition Specific Modules have also been made possible by unrestricted non-EU funding.