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.
Software Maintenance Management Planning
Combining the development efforts and the ongoing maintenance of your software is key to ensuring that you have a robust and constantly improving and evolving solution.
Having a software maintenance plan is just as important as the initial development. Professionally managed maintenance allows for the continual improvement and adaptation to changing business needs and technological advancements.Read More
Patient Registry Data and General Data Protection Regulation
GDPR stands for General Data Protection Regulation. First brought into effect in 2018, all businesses have been affected by the EU regulation worldwide. In this article, we will highlight what the regulation entails, key terms/items from the legislation, it’s importance in the modern world, how it measures up against other regulations and finally, how we as a company ensure our compliance.Read More
OpenApp supports Metachromatic Leukodystrophy Disease MLD Research
To celebrate Rare Disease Day 2023, which takes place on the 28th of February, we are changing our colours and showing our support for the Metachromatic Leukodystrophy Disease (MLD) Support Association UK. OpenApp have been working MLD support Association UK for many years under our Rare100 CSR scheme, a Corporate Social Responsibility (CSR) initiative run in 2018.Read More
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