Available since February 2022, the Achondroplasia Module of the European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) is open.
This module has been developed with experts from EAF and the European Reference Network for Rare Endocrine Conditions, ERN BOND, as well as patient representatives from throughout Europe. The disease specific module both collects clinician reported outcomes, including foramen magnum stenosis, and patient related outcomes. The registry is open for all those interested, you do not need to be part of the reference networks to start registering. Patients/carers can get access as well and are able to fill out the patient related outcomes themselves, which can be downloaded by the physician to include in the patient hospital files if desired.
Clinicians: More information about the disease specific module and the tools used can be found here: https://eurr-bone.com/achondroplasia-disease-specific-module/
Patients and carers: please follow the link here: https://eurr-bone.com/patients/
More information about EuRR-Bone, including approved ethical protocols from various countries, our data access protocol and much more can be found here: www.eurr-bone.com