Clinical Patient Management System for European Reference Networks - OpenApp Connecting with Rare Disease Colleagues

Mel_McIntyre_Conference

During 2016 some of the team here have been attending, exhibiting and speaking at various health & rare disease events.

eHealth Ireland Ecosystem

Our MD Mel McIntyre gave an update at the eHealth Ireland Ecosystem event. Mel took to the podium to discuss how a registry can make a huge impact on patients with and research into Bipolar. He led a discussion that was hugely engaging and helped advance thought on this important project.

Along with Dr. Barry White, Consultant Hematologist at St James Hospital, Mel discussed the key requirements of integration between stakeholders, the need for data repositories and the use of open source platforms as a vital element of the future of eHealth projects.

British Paediatric Surveillance Unit

George Reynolds, our Director of Business Development and Anil Metha exhibited at the British Paediatric Surveillance Unit (BPSU) Rare Disease Conference in the UK to help celebrate Rare Disease Day. The BPSU held a tea party with many patients’ organisations in attendance. This was entirely inspiring.

Eurordis

George hopped on a plane after BPSU to celebrate Rare Disease Day with Eurordis. Last year, we became a sapphire member. It is a pleasure to share our domain knowledge of patient registry software with the other members. A key take-away was the real potential that European Reference Networks bring to patient care.

Genetic Disorders Leadership Symposium

Our MD was back on the road to attend and speak at UK Genetic Disorders Leadership Symposium with Daniel Levi of the CATS Foundation, OpenApp provide the CATS Foundation patient registry software.

It was an inspiring session about how small charities supporting rare diseases can create and implement a cost-effective disease-specific registry. Daniel spoke about the impact of having a registry for Tay Sachs.

Mel spoke about how our registry software is used for gathering evidence. He also announced our free registry software to manage up to 100 patients and 4 users. Using the dataset as defined by Epirare and using OpenEHR thinking, this is an ideal way for smaller patient organisations to either get started with a registry or update their existing one.

A key take-away for us was collaboration and connections continue to be important in the area of rare disease patient registries and the value that they bring.


Learn more about OpenApp's work in the rare disease space here=> Rare Disease Patient Registry Software

Latest News

Software Maintenance

Software Maintenance Management Planning

29 May 2023

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

29 May 2023

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 Rare disease day

OpenApp supports Metachromatic Leukodystrophy Disease MLD Research

2 March 2023

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

ADDRESS

Avoca House,

189-193 Parnell Street,

Ireland.

D01 H578

 

 

EMAIL

PHONE

Irish Number:

+353 (1) 872 9331

US Number:

+1 (914) 455-0216

Copyright © 2023 OpenApplications All rights reserved.

OpenApplications Consulting Ltd. Registered in Ireland No. 355595