Patient Registries in Action

OpenApp has developed a number of patient registries for rare and chronic diseases. While all diseases have their own requirements and nuances, they have a common need to asses patient care, improve care pathways and encourage research to further understand their disease and perhaps, undergo clinical trials. OpenApp’s flexible platform supports end to end requirements.


European Cystic Fibrosis Society

A pan European Registry solution spanning 33 countries and 42,000 patients. The European Cystic Fibrosis Society Patient Registry collects demographic and clinical data from consenting people with cystic fibrosis (CF) in Europe, in accordance with agreed inclusion criteria and definitions. The information is used to measure, survey and compare aspects of CF and its treatment in participating countries, to deepen our understanding of CF, to improve standards of care, to provide data for epidemiological research and to facilitate public health planning.


Irish National Orthopaedic Register

The Irish National Orthopaedic Register (INOR) is a secure web-based, real time (live) system used to collect demographic, clinical and implant component data on patients admitted to hospital for primary and revision hip and knee surgery in hospitals nationally. INOR breaks ground in a number of areas; it is a secure system which provides traceability of components, while protecting the privacy of non-consented patients. Additionaly, an Arthroplasty first, it records real-time barcode scanning in theatre.


Cystic Fibrosis Registry of Ireland

The Cystic Fibrosis Registry of Ireland (CFRI) is a customized extension to the European Cystic Fibrosis Society (ECFS) platform. The information is used to measure, survey and compare aspects of CF in Ireland. Including all of the ECFS functionality, the Irish registry had increased requirements including deeper encounter data collection needs and advanced reporting requirements. The information is used to support new health technology assessments, compile reports for the EMA and support health planning in Ireland and the EU.

CF View

CF View Patient Portal

A patient portal developed for Irish and Slovenian Patients. The portal allows patients to log in and engage with their medical care. Patients can view key clinical indicators, medications, genotypes, hospitalizations along with trend graphs and educational videos.


CATS Foundation

Tay Sachs and Sandoff disease are complex illnesses which affect a range of people. An individual diagnosed with either disease will suffer a relentless deterioration of mental and physical abilities. CATs Foundation is a registry over two countries, it’s main objective is to gather data and to encourage pharma involvement.

Alpha One

Alpha 1 Foundation

Alpha-1 antitrypsin deficiency (Alpha-1 for short) is a genetic condition where the body does not produce enough Alpha1 antitrypsin protein. People born with Alpha-1 can develop lung, liver, or in rare cases skin problems.Collaborating with the Alpha-1 Foundation, OpenApp created a patient registry for the foundation.


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A huge thank you to one our great sponsors @OpenappIreland. Their support of the event is highly valued

You will be able to meet some of the team at the NOC Conference on January 31st

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Catch our article celebrating achieving our #ISO27001 certificate! Now updated to include a short interview with David Cavanagh, who managed the project. #patientregistry #raredisease #datasecurity

OpenApp are delighted to announce that we will be attending the National Office of Clinical Audit (NOCA) conference on the 31st of January in RCSI. If you wish to attend please register here: We hope to see you there!

Have an in-depth look at our Custom Traffic Incident Management System.
Our solution for ERTO helps oversee 1,200 kilometers of motorway allowing them to manage incidents, share data with stakeholders, and report data pertaining to road traffic incidents.

Just over a week to go until the Irish Healthcare Awards @HealthAwardsIrl OpenApps' projects in collaboration with the HSE are in the running for "Best Use of Information Technology" & "Public Health Initiative of the Year" 🤞 #IMTIHA22

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