ECTS, ERN BOND and EuRR-Bone are pleased to announce the set up of a new registry on Melorheostosis.
This disease specific module is a joint project of the Rare Bone Disease action group of the European Calcified Tissue Society (ECTS) , the European Reference Network for Rare Bone Disorders (ERN BOND) and the European Registries for Rare Bone and Mineral Conditions (EuRR-Bone).
To date, the knowledge on rare diseases is scarce, information is frequently fragmented, and data are scattered among different institutions and hospitals. This scenario affects the diagnostic process, delay the potential treatments and slowdown the research activities.
The identification of a set of common data elements, composed of core information on disease history, clinical expression features (including imaging evaluations), genetic assessment, treatments and surgical procedures, sample availability will support the merging process and allow to create a wider and well organized dataset.
>> Please find here more information about the Melorheostosis module
>> You may also be interested in the ECTS-ERN BOND Webinar on Melorheostosis