OpenApp to Develop Game-Changing Software in the Fight against Rare Diseases across Europe

Dublin-based software company, OpenApp, has announced a four-year contract with the EU which is estimated to be worth €5million.

OpenApp, which specialises in eHealth, Patient Registry and Patient Health Record will now have its software used by 24 European Reference Networks which supports over 6,000 rare diseases with over 30 million sufferers.

Imagine if you are one of the 30 million patients who suffer from a rare disease. What if the best specialists from across Europe could join their efforts to tackle your rare disease and give you the best highly specialised healthcare?

That’s the purpose of the European Reference Networks (ERNs) and it has just become a reality. 23 ERNs across all rare diseases were approved by the European Commission late December 2016, with another to be approved in the next round. Through these networks, over 370 hospitals and nearly 1,000 specialist centres of expertise will be linked, connecting thousands of experts, researchers and doctors, across 25 EU Member States.

The workings of the ERNs will rely on a common IT platform which will be developed and managed exclusively by OpenApp with support from Vitro Software, another Irish healthcare software business.

Teams of multi-disciplinary medical specialists will meet as a virtual clinical board. Connecting through the dedicated IT platform, they will discuss patients’ details to help diagnose and suggest treatment of 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. This will become the standard tool for the ERNs.

Mel McIntyre, MD of OpenApp commented at the announcement, “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.” McIntyre concluded.

In order to deliver a project of this scale, OpenApp enlisted the support of healthcare IT company across Europe including Cineca in Italy, Aridia in Scotland, Vu2Vu in Ireland and Osimis in Belgium.

What’s new about ERNs

What’s new about the ERNs is that it establishes a formal connection of experts between Member States, as recognised by the EU. It inaugurates s a structured platform which allows clinicians to pool their knowledge in areas where clinical expertise is rare. The EU have pledged support for the next 5 years to ERNs.

There has been much excitement among clinicians and patient groups at the announcement of the common IT platform, a real step toward increasing cross-border healthcare.

“OpenApp is facilitating our goal of utilising information technology to connect fundamental aspects of care provision in a manner that is patient-centric and clinician and researcher engaged. This is a strategy that erodes borders and allows key information to drive better, more inclusive outcomes, securely, safely and as a supportive community.” said Dr Dimitri Wall, eHealth coordinator ERN Skin.

“Seeing this embedded in a pan-European effort to address rare diseases is exciting and will revolutionise equity of access to high-quality care.” continued Professor Alan Irvine, Crumlin Children’s Hospital Ireland.

Yann Le Cam, CEO of EURORDIS–Rare Diseases Europe, a non-profit alliance of over 700 rare disease patient organisations summarised the importance of the ERNs, “We stand at a point in history – by connecting patients, experts and hospitals through ERNs, we will revolutionise rare disease patients’ access to high-quality care and will be able to measure the improvement of patient health outcomes. This will help to break isolation of patients, tackle the silos that experts work in and help to reduce the current inequality in care reported between rare diseases and between Member States.“

He continued, “EURORDIS and OpenApp have a long standing collaboration and exchange of views; OpenApp has recently become a EURORDIS’ corporate partner; we welcome this important new step in our collaboration to bring innovation of value to patients and doctors.”