OpenApp Takes Part in Epidermolysis Bullosa/ERN Registry Meeting
OpenApp is delighted to take part in an ERN Working Group on Wednesday, 8th June. Representatives from all over Europe will converge in Dublin as part of the proposed ERN for Rare and Undiagnosed Skin Diseases to discuss creating a collaborative patient registry.
As part of the European Reference Network, an eHealth committee has been established. They are bringing together representatives from Ireland, UK, Italy, France and Germany to discuss principles and milestones of creating a collaborative approach to creating an EB registry.
The group aims to support the needs of the clinical groups within the proposed ERN by proposing a collaborative approach that recognises the achievements and sovereignty of existing information systems (for example patient registries).
Good informed decisions can only be made based on the quality and availability of information and data that one has. The importance of creating an EB patient registry is essential. The EB registries can influence many of actions, help the better understanding EB causes and natural history, influence research development, select patient’s involvements in trials and monitor the trials success.
A key enabler of ERNs, which we have written about, will be strong eHealth-focused IT platforms to enable, for example, videoconferencing, image sharing, outcome measurement, research and clinical trial facilitation.
We will discuss our patient-centred platform which encompasses patient, clinical, trials and genetic portals. It’s inter-operable with in-built consent and governance which is a key concern for organisations looking to create a registry, in particular for an ERN.
Increasing Patient Communication and Engagement: How Children’s Tumour Foundation (CTF) are reaching more patients Through Multi-Language Functionality
Increasing Patient Communication and Engagement: How Children’s Tumour Foundation (CTF) are reaching more patients Through Multi-Language Functionality OpenApp are pleased to announce the NF Registry by Children’s Tumour Foundation (CTF) is now live in four additional languages: French, Italian, Portuguese and Spanish. This new enhancement provides access to the registry…Read More
European cystic fibrosis society share their registry experience The European Cystic Fibrosis Society Patient Registry (ECFSPR) is one of OpenApp’s more mature registries having first been developed in 2012. It has grown exponentially through the continued work of both the European Cystic Fibrosis Society (ECFS) and OpenApp and currently accommodates…Read More
Multi agency toolkit, incident management and location coordination What is AeroMedical? The Aero-Medical module is a custom software application developed by OpenApp which is used by the Health Service Executive (HSE) Aero-Medical Services, the Air Corps and the Irish Coast Guard . It consists of user-interface/screens showing real-time availability of…Read More