The Future of Registries: Comments from the Community Research

The Future of Registries – Comments from the Community is the first part in a series of initiatives designed to engage as many people in conversations to get a better, shared understanding of the usage and benefit of rare disease patient registries.
We created this survey to gain real world insights into registries as of early 2019.
We would like to get as much feedback and comments from the community to get a clear picture of the current state of registries.
We are looking for your help and time in filling out this short survey, it will take less than 10 minutes and we really appreciate your time.
Findings gathered will be shared with the community. We would also appreciate you sharing this survey with your colleagues in the rare disease community.
Thank you in advance for your time.
Click here to start the survey
The OpenApp team
Latest News
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 MorePatient 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 MoreOpenApp 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 MoreADDRESS
Avoca House,
189-193 Parnell Street,
Ireland.
D01 H578
Copyright © 2023 OpenApplications All rights reserved.
OpenApplications Consulting Ltd. Registered in Ireland No. 355595