ERN BOND is currently conducting activities for reaching the final goal of implementing standardised protocols and guidelines for diagnostics, treatment and follow-up that will give benefit to the whole rare bone disease community.
WG3 Good Practice Guidelines identified Osteogenesis Imperfecta as “pilot disease”. As a starting point for developing these guidelines, the WG collected those already in existence in order to obtain a picture of the current status of clinical practice.
These guidelines (27 in total) were then translated from the original languages (i.e., French, Italian, German, Swedish and Spanish) into English in order to allow BOND experts to have a common ground for starting the drafting of the guidelines.
Guidelines development is now included in the recently started EC new project activated to provide assistance to the ERNs for development and appraisal of Clinical Practice Guidelines. This 4 years project will enable the ERNs to adopt a common methodology and develop their own tools, adapted to the specific rare diseases each ERN is addressing.
More info about this project are detailed in the minutes of the kick-off meeting held in Brussels in February 2020: https://ec.europa.eu/health/sites/health/files/ern/docs/20200218_news_en.pdf