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European Reference Networks

European Reference Networks

OI & ERN BOND

The ERN-BOND are looking to put together an introductory registry for OI. Registries are a type of research study where people can be tracked over time to understand how the rare disease affects them. This is really important for rare diseases as the information helps researchers to plan the trial of new treatments. The European Reference Network registry survey has been designed with patients in mind and wants to understand what people with OI would want to get out of joining a research study. The results of this survey will be analysed with responses from around the world to understand the needs of patients and published.

How you can help

It would be fantastic if the Brittle Bone Society community get involved. The survey can be completed by children, adults, parents and family members. The deadline is 19th of August.

https://www.surveymonkey.com/r/ERN-BONDpatients

What is an ERN? 

European Reference Networks (ERN) create a clear governance structure for knowledge sharing and care coordination across the EU to improve access to diagnosis and treatment, as well as the provision of high-quality healthcare for patients. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The ERN’s are 24 virtual networks of centres of expertise and healthcare providers that are organised across borders. For more information about the ERNs and the EU health strategy, please visit  ec.europa.eu/health/ern

What is ERN-BOND

ERN BOND is one of the 24 networks and brings together all rare bone diseases. The network is focusing initially on osteogenesis imperfecta (OI), X-linked hypophosphataemic rickets (XLH) and achondroplasia (ACH) as exemplars, based on disease prevalence, diagnostic and management difficulty and novel emergent therapy, before moving on to rarer diseases when systematic approaches are established.

Working with patients, BOND will develop patient-reported outcome and experience measures. The network will develop guidelines, leading to the development and dissemination of best practice. As new therapeutics are developed, the network will work to ensure rapid access to studies for affected patients.

ERN-BOND  have previously selected osteogenesis imperfecta, as an area of focus, to understand the common challenges in diagnosing rare bone diseases and to provide recommendations for improving referrals, reducing diagnostic errors and shortening diagnostic delays. Brittle Bone Society members provided feedback to this questionnaire. In February 2018 a White Paper on OI was presented at the EU Commission to present the existing challenges of diagnostics in OI.