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 assess patient care, improve care pathways and encourage clinical research to further understand their disease and perhaps, undergo clinical trials. OpenApp’s flexible patient registry software platform supports these end-to-end requirements. Read on to find out more about our patient registry software in action.

The graphic showing two portal feeding data into an overall patient registry dataset. On the left a 'patient and carer portal', and on the right 'clinical portal' feeding into the disease registry via a form.

A pan-European registry solution spanning 33 countries and 42,000 patients. The European Cystic Fibrosis Society Patient Registry brings together demographic and clinical data collected 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 understanding of CF, to improve standards of care, to provide data for epidemiological research, and to facilitate public health planning.

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 or 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. Additionally, an arthroplasty first, it records real-time barcode scanning in theatre.

The Cystic Fibrosis Registry of Ireland (CFRI) is an extension of the European Cystic Fibrosis Society platform.

The information is used to measure, survey and compare aspects of CF in Ireland. Including all of the European Cystic Fibrosis Society functionality, the Irish CF patient registry had additional requirements including deeper encounter data collection needs and advanced reporting requirements. The real-world data collected is used to support new health technology assessments, compile reports for the European Medicines Agency (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.

The Children's Tumor Foundation are a patient-led group on a mission to drive research, expand knowledge, and advance care for the NF community.

Originally they embarked on their longitudinal patient data collection journey in 2012.  7 years on, to meet their growing needs and support global expansion, they moved to OpenApp's patient registry software platform and today are the international flagship patient registry for NF.

Alpha-1 antitrypsin deficiency (Alpha-1) is a genetic condition where the body does not produce enough of the Alpha-1 antitrypsin protein. In Ireland it severely affects 15,000+ people, with another 250,000 carriers also at risk.

The Alpha-1 Foundation, based at Beaumont Hospital is part of the Royal College of Surgeons in Ireland (RCSI) Education and Research Centre and works to aid understanding of the condition, improve clinical care for patients, and aid recruitment for clinical trials. In 2017 Alpha-1's re-developed the patient registry.

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