European Reference Network – OI White Paper
- Posted on Jan 25, 2019
The European Reference Network for Rare Bone Diseases (ERN-BOND) selected osteogenesis imperfecta to use as a case study. The research aimed to provide further understanding of the common challenges in diagnosing rare bone conditions and to provide recommendations for improving referrals, reducing diagnostic errors and shortening diagnostic delays.
In February 2018 a White Paper on OI was presented at the EU Commission to present the existing challenges of diagnostics in OI.
“The objective of the White Paper is to provide an overview of the current situation relating to diagnosing OI in the 10 Member States represented within the ERN-BOND. As collective experience points towards delays in detection, this paper’s main aim is to identify the key challenges and potential solutions to further reduce these shortcomings, and improve the patient experience. Hence, information was collected from both patients and healthcare professionals (HCPs) through two separate questionnaires carried out between November 2017 and January 2018.”