Patient Registries in a Digital Europe
The PARENT Joint Action recently held its final event entitled 'Patient Registries in a Digital Europe'. They concluded a successful project which has now provided tools and resources to support the long-term perspective on registry interoperability.
Back in 2011, the Joint Action group were tasked with supporting EU Member States in developing comparable and interoperable patient registries in fields of identified importance (e.g. chronic diseases, medical technology). The aim of which was to rationalize the development and governance of patient registries. This thus would enable analyses of secondary data for public health and research purposes in cross-border settings.
It was co-funded by the European Commission and 12 Member States.
The main PARENT resources presented at the final event were the Registry of Registries (RoR) – mapping and analysis of existing registries, Methodological Guidelines on Governance of Registries, and the Registry Assessment tool to identify unmet needs/standards, quality, completeness of data and interoperability of patient registries.
What the action group really shows is just how important registries are to rare disease organisations and the community as a whole. The Registry of Registries (as of today) had over 200 registries listed. And more importantly, one of the key services that PARENT wants to provide is to help new and existing registries to be more interoperable. Something which we here at OpenApp have been talking about for the past number of years. Our platform that we have developed which our patient registry software sits on was created with inter-operability as standard.
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