Guidelines

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.

Thw thematic group on Good Practice Guidelines identified Osteogenesis Imperfecta as “pilot disease”. As a starting point for developing these guidelines, the group 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 into English in order to allow BOND experts to have a common ground for starting the drafting of the guidelines.

Clinical Practice Guidelines for ultra-rare skeletal dysplasias will be also prepared.

Guidelines development is now included in the recently ongoing 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.

ERN BOND will also map existing Clinical Practice guidelines for Rare Bone and Mineral Disorders used by ERN BOND members to determine the need for harmonisation and to update of currently used guidelines, focusing on Osteogenesis Imperfecta.

List of clinical practice guidelines related to ERN BOND