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.

Latest News

Clinical Patient Management System for European Reference Networks: A Case Study

24 June 2021

Clinical Patient Management System for European Reference Networks: A Case Study The Clinical Patient Management System (CPMS) is a virtual consultation platform which enables healthcare professionals to present patient cases and collaborate with other healthcare professionals to provide diagnosis, care and treatment across borders. What are the European Reference Networks?…

Read More

Digital and Central: Treat rare diseases through digital networking across institutions

24 June 2021

Knowledge sharing at the Centre for Digitisation in telemedicine, germany and discussing CPMS OpenApp CEO, Con Hennessey, has been invited to speak about the Clinical Patient Management System (CPMS) at a the “Digital and central: Treat rare diseases through digital networking across institutions” online symposium.  Launched in 2017, CPMS serves as…

Read More

“Ireland’s Commercial Open Source Ecosystem” Opportunities

24 February 2021

How is Open Source driving innovation across global industries as well as within Ireland? Skillnet Ireland will be hosting their inaugural Open Source & Ireland’s Innovation Ecosystem Conference on Thursday, February 25th from 4-6pm GMT.  The agenda is packed full of speakers who are experts on the use of Open…

Read More


Avoca House,

189-193 Parnell Street.

Dublin 1, Ireland.

D01 H578

OpenApp is now hiring an enthusiastic self-starter to join a growing sales and marketing team in Dublin as a Senior Marketing and Business Development Representative! Details on the role and how to apply can be found here:

OpenApp is now hiring a Sr. Application Developer! Head to our website for more information and instructions to apply.

Our CEO, @ConHennessy, will be speaking about the Clinical Patient Management System (CPMS) next week at a the “Digital and Central: Treat rare diseases through digital networking across institutions” symposium. Learn more and register: #telemedicine

We have been building open source solutions for 18 years. #TBT to an interview of the late Mel McIntyre who founded OpenApp with the belief that “[open source] will help to remove the economic barriers to scalability and lead to more opportunities.”

#TBT to the Open Source & Ireland's Innovation Ecosystem panel discussion. We have been providing open source solutions for the past 20 years, and discuss some of our insights with other Open Source leaders in Ireland here: #opensourceireland #innovation

Load More...

Copyright © 2021 OpenApplications All rights reserved.

OpenApplications Consulting Ltd. Registered in Ireland No. 355595