Study & Working Groups
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.
Overview of Current Study Groups
- Current status of healthcare for transgender adolescents across Europe
- Natural History of Achondroplasia
- Natural History of FD/MAS
- Natural History of iPPSD/PHP
- Natural History of Melorheostosis
- Natural History of Parathyroid Carcinoma
- Natural History of Rare Obesity
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 on forming and being a member of a Study Group. For results of our previous Study Groups, please take a look at our Publications.
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.
Overview of Current Working Groups
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 on forming and being a member of a Working Group. For our previous Working Groups, please take a look at this overview.
