Some 23 ERNs across rare diseases were approved by the European Commission in late December 2016. The approved ERNs include, for example, the ERN on Rare Bone Disorders, ERN on Rare Eye Diseases and the ERN on Transplantation in Children.
Over 370 hospitals and nearly 1,000 specialist centres of expertise will be linked through these networks connecting thousands of experts, researchers and doctors across 25 EU Member States.
In Europe, more than 30 million people are affected by a rare disease. The purpose of the ERNs is to support specialists across Europe in concentrating knowledge and resources for conditions that require highly specialised healthcare.
The ERNs will facilitate teams of multidisciplinary medical specialists meeting as a virtual clinical board. Connecting through the dedicated IT platform, they will be able to discuss patients’ details to help diagnose and suggest treatment for rare diseases across Europe. The IT infrastructure will support the confidential exchange of patient information, as well as storing clinical data and medical images collected by each ERN.
Mr Mel McIntyre, Managing Director of OpenApp, commented: “The idea that we can contribute to improved diagnosis of patients with rare disorders is very invigorating for us at OpenApp. We have been developing patient-centric information systems for a number of years in collaboration with Irish health services.
“We now get to use this knowledge and expertise on a European stage to promote shared cross-border healthcare. This is very exciting for us, our partners and friends, as well as European citizens who will benefit from this initiative.”
OpenApp’s IT platform is currently used for many rare diseases in both clinical and non-clinical settings. It is also developing and supporting registries for various diseases including cystic fibrosis, Tay-Sachs disease, Alpha-1 antitrypsin deficiency, epidermolysis bullosa, atopic dermatitis and haemophilia.
In order to deliver a project of this scale, OpenApp enlisted the support of healthcare IT companies across Europe, including Cineca in Italy, Aridia in Scotland, Vu2Vu in Ireland and Osimis in Belgium.
