WG5 DATABASE: NATURAL HISTORY OF DISEASES

UK Javaid Muhammad Kassim University of Oxford, Nuffield Orthopaedic Centre, Oxford University Hospitals Trust kassim.javaid@ndorms.ox.ac.uk
Germany Grasemann Corinna Universitätsklinikum Essen Klinik für Kinderheilkunde II corinna.grasemann@uk-essen.de

 

Objectives

 

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.

 

  1. Develop a scoping questionnaire to collect the current status, barriers and opportunities for a single BOND registry for the BOND white book
  2. 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.
  3. 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.
  4. To understand the barriers and opportunities for extending the BOND registry outside of BOND member health care providers.