Posts Tagged ‘Rare Disease Registry’
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 MoreChildrens Tumor Foundation Innovative Patient Reported Patient Registry Platform
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 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 MoreIncreasing Patient Communication and Engagement: How the Children’s Tumour Foundation Reaches More Patients Through Multilingual Software
HomeWhat We Do Health Data Analytics Patient Registry Software Geospatial Analytics Clinical Patient Management – ERNsOur Work Health Data Analytics in Action Patient Registries in Action Geospatial Analytics in ActionAbout Us CareersInsightsContact Us The Children’s Tumor Foundation Patient Registry Goes Multilingual Four Additional Languages OpenApp are pleased to announce the NF Registry by Children’s Tumor Foundation (CTF) …
Read MoreEuropean Cystic Fibrosis Society Share Their Patient Registry Experience
HomeWhat We Do Health Data Analytics Patient Registry Software Geospatial Analytics Clinical Patient Management – ERNsOur Work Health Data Analytics in Action Patient Registries in Action Geospatial Analytics in ActionAbout Us CareersInsightsContact Us European cystic fibrosis society share their registry experience The European Cystic Fibrosis Society Patient Registry (ECFSPR) is one of OpenApp’s more mature registries having…
Read MoreDigital and Central: Treat rare diseases through digital networking across institutions
HomeWhat We Do Health Data Analytics Patient Registry Software Geospatial Analytics Clinical Patient Management – ERNsOur Work Health Data Analytics in Action Patient Registries in Action Geospatial Analytics in ActionAbout Us CareersInsightsContact Us Knowledge sharing at the ‘Centre for Digitisation of Telemedicine’, Germany OpenApp have been invited to speak about the Clinical Patient Management System (CPMS). Launched…
Read MoreOpenApp Featured in Rare Revolution Magazine: Patient Registries – Myth vs Fact
HomeWhat We Do Health Data Analytics Patient Registry Software Geospatial Analytics Clinical Patient Management – ERNsOur Work Health Data Analytics in Action Patient Registries in Action Geospatial Analytics in ActionAbout Us CareersInsightsContact Us OpenApp Featured in Rare Revolution Magazine: Patient Registries – Myth vs Fact 04.02.2021 Clinical Patient Management System for European Reference Networks: A Case Study…
Read MoreCon Hennessy Interview With Rare Revolution Magazine
HomeWhat We Do Health Data Analytics Patient Registry Software Geospatial Analytics Clinical Patient Management – ERNsOur Work Health Data Analytics in Action Patient Registries in Action Geospatial Analytics in ActionAbout Us CareersInsightsContact Us Con Hennessy Interview with Rare Revolution Magazine 09.10.2020 We are delighted to announce that our CEO, Con Hennessy, has been featured in esteemed rare…
Read MoreFindaure workshop – ‘Building a Rare Disease Patient Registry’.
HomeWhat We Do Health Data Analytics Patient Registry Software Geospatial Analytics Clinical Patient Management – ERNsOur Work Health Data Analytics in Action Patient Registries in Action Geospatial Analytics in ActionAbout Us CareersInsightsContact Us Building a Rare Disease Patient Registry 18.09.2019 Con Hennessy of OpenApp was delighted to be invited to speak at the Findaure workshop – ‘Building…
Read More