OpenApp Featured in Rare Revolution Magazine: Patient Registries - Myth vs Fact
Clinical Patient Management System for European Reference Networks: A Case Study
We are delighted to inform you that we have featured in one of the foremost publications in the rare disease space. In the Autumn 2020 issue of Rare Revolution magazine we delve into some frequently asked questions regarding registries and use our expertise to debunk commonly held misconceptions about setting up your own registry.
For many organisations setting up a registry can be a daunting endeavour, rife with uncertainty, from engaging and aligning stakeholders to assessing cost and securing funding. In our 10 years of experience supporting clinical data collection, we have heard and addressed many of these same concerns.
So if you find yourself or your colleagues questioning whether a registry will “cost us millions”, or perhaps you’re more concerned about the perceived complexity in establishing a registry, set aside some time to read this short article where we address many of your issues.
Check it out: http://bit.ly/Myths-Facts
To keep up to date with all things Patient Registry, please follow us on twitter @OpenAppIreland
Real-World Data Collection Enables Evaluating the Safety and Effectiveness of Treatments for Spinal Muscular Atrophy
This exciting initiative combines collecting real-world patient data by neurologists, clinicians and patients to enable clinical research and engagement of spinal muscular atrophy patients receiving treatment.
SMArtCARE is a multi-year joint initiative of neurologists, paediatricians, and patients with spinal muscular atrophy (SMA). Spinal muscular atrophy refers to a group of rare genetic diseases resulting in muscle wastage and weakness. Symptom onset can be seen in both children and adults but the most severe form typically presents in children under 18 months old. Until recent treatments survival past childhood was unusual.Read More
The NF registry is a one of a kind project, where the OpenApp team worked in collaboration with CTF to develop and support a platform that meets their requirements, as a secure and effective tool to empower NF patients and their caregivers. A dedicated registry is the most efficient way to raise awareness/advocate for NF, expand the NF community, and connect to help end NF.Read More
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