WG5 Database: Natural History of Diseases
|UK||Javaid||Muhammad Kassim||University of Oxford, Nuffield Orthopaedic Centre, Oxford University Hospitals Trustemail@example.com|
|Netherlands||Appelman-Dijkstra||Natasha||Leiden University Medical Center, LUMC||N.M.Appelman-Dijkstra@lumc.nl|
To develop a specification for a rare bone disease registry to improves our understanding of the natural history of rare bone diseases, combining all clinical data into the registry of registries; To reinforce research and epidemiological surveillance, through setting up of shared biobanks and registries, To promote research within the ERN.
- Develop a scoping questionnaire to collect the current status, barriers and opportunities for a single BOND registry for the BOND white book
- Develop the specification for a BOND registry that informs the natural history of rare bone diseases using conditions of osteogenesis imperfecta and achondroplasia as examples of the registry structure.
- Develop a specification of high-level questions that can be applied to the vast majority of other rare bone diseases to understand their natural history.
- To understand the barriers and opportunities for extending the BOND registry outside of BOND member health care providers.