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:

To keep up to date with all things Patient Registry, please follow us on twitter @OpenAppIreland

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Great talk from Prof. Edward Gregg @noca_irl discussing the benefits of registries in intervention and effectiveness research #noca2023

An excellent Impact Report presented by NOCA Exec. Director Collette Tully, detailing the QOL of Patients post arthroplasty surgery benchmarked by country and the impact INOR has had on policy #NOCA2923 #NOCAIrl


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