Data collection on rare bone and mineral conditions in Europe: The landscape of registries and databases
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Updated: Jun 24, 2025
Scanning Skeletal Remains for Bone Mineral Density in Forensic Contexts
Published on: January 29, 2018
Ana Luisa Priego Zurita1, Corinna Grasemann2, Manila Boarini3
1Department of Internal Medicine, Division of Endocrinology, Leiden University Medical Centre, Leiden, Netherlands.
Background:
knowledge on the natural history of rare diseases is necessary to improve outcomes. Disease registries may play a key role in covering these unmet needs in the rare bone and mineral community.
Objective:
to map existing bone and mineral conditions registries in Europe and their characteristics.
Methods:
online survey about the use of registries/databases and their characteristics. This survey was disseminated among members of the European Reference Network on Rare Bone Diseases (ERN BOND) and non-ERN experts in the field of bone and mineral conditions as well as patient organisations.
Results:
sixty-three responses from health care providers (HCPs) and 10 responses from patient groups (PGs) were collected. The response rate for ERN BOND members was 55%. Of 63 HCPs, 37 declared using a registry. Osteogenesis imperfecta (OI) was the most registered condition. We mapped 3 international registries, all were disease-specific.
Conclusions:
There is a need for developing a common high-quality platform for registering rare bone and mineral conditions.
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