Study Groups

Study Groups are composed of experts from different disciplines including patient representatives. Each group brings together their expertise to accomplish its objectives. These might include developing research projects within the registries such as developing Condition Specific Modules.

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

Overview of Study Groups

• Achondroplasia
• Fibrous Dysplasia / McCune Albright Syndrome (FD/MAS)
• Gender Incongruence
• iPPSD/PHP
• Melorheostosis
• Osteogenesis Imperfecta (OI)
• Parathyroid Carcinoma
• Pediatric Differentiated Thyroid Carcinoma
• Pituitary Tumour
• Rare Hypophosphataemia
• Rare Obesity

At the moment we are in need of a pediatric surgeon in our Achondroplasia Study Group, a member (preferably a geneticist) in our Osteogenesis Imperfecta Study Group and a ERN-BOND member in our Melorheostosis Study Group.