Real-World Data Collection Enables Evaluating the Safety and Effectiveness of Treatments for Spinal Muscular Atrophy

Logo for SMArtCARE a joint initiative for spinal muscle 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.

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Childrens Tumor Foundation Innovative Patient Reported Patient Registry Platform

Childrens tumor foundation logo

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.

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Patient 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.

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OpenApp supports Metachromatic Leukodystrophy Disease MLD Research

OpenApp Rare disease day

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.

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Increasing 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 Clincally Reported Data (CRD) Product Patient Reported Data (PRD) Product 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…

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European Cystic Fibrosis Society Share Their Patient Registry Experience

HomeWhat We Do Health Data Analytics Patient Registry Software Clincally Reported Data (CRD) Product Patient Reported Data (PRD) Product 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…

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Digital and Central: Treat rare diseases through digital networking across institutions

HomeWhat We Do Health Data Analytics Patient Registry Software Clincally Reported Data (CRD) Product Patient Reported Data (PRD) Product 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…

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OpenApp Featured in Rare Revolution Magazine: Patient Registries – Myth vs Fact

HomeWhat We Do Health Data Analytics Patient Registry Software Clincally Reported Data (CRD) Product Patient Reported Data (PRD) Product 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…

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Con Hennessy Interview With Rare Revolution Magazine

HomeWhat We Do Health Data Analytics Patient Registry Software Clincally Reported Data (CRD) Product Patient Reported Data (PRD) Product 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…

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Findaure workshop – ‘Building a Rare Disease Patient Registry’.

HomeWhat We Do Health Data Analytics Patient Registry Software Clincally Reported Data (CRD) Product Patient Reported Data (PRD) Product 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…

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