Condition Specific Modules
Condition Specific Modules 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.
If you would like to join or start a Working or Study Group please contact us at:Â registries@lumc.nl.
In the Core Registry these are the current Condition Specific Modules available:Â
- Achondroplasia
- Chronic Non-bacterial Osteitis (CNO) available soon!
- Fibrous Dysplasia / McCune Albright Syndrome (FD/MAS)
- Gender Incongruence
- iPPSD/PHP
- Langerhans Cell Histiocytosis (LCH)Â
- Melorheostosis
- Non-Langerhans Cell Histiocytosis (Non-LCH)
- Osteogenesis Imperfecta (OI)
- Parathyroid Carcinoma
- Pediatric Differentiated Thyroid Carcinoma (Ped-DTC)
- Pituitary Tumour
- Rare Hypophosphataemia
- Rare Obesity