OpenAppRegistry is the new standard for rare disease registry software in Europe. Following the EPIRARE data set recommendations, it allows patient advocates or organisations to have a web-based, secure registry.
A disease registry is a database, whether online or paper that contains information on the characteristics of a population affected by a given disease.
Many registries start life as a simple spreadsheet. Over a period of time features are added to meet user demands. This often evolves into a tangle of inter-related spreadsheets commonly referred to as ‘spreadsheet hell‘. These spreadsheets often remain silos of information, unable to inter-operate with other databases or data sources.
Benefits of a Rare Disease Registry
However rare disease registries are more than this – a registry can become a virtual centre of expertise highly optimised around the target disease. A disease registry can improve patient care, enhance health planning, develop clinical research and facilitate clinical trials around the disease.
OpenApp’s registry software, OpenAppRegistry, supports patient advocacy groups and organisations by providing an inter-operable, web-based registry with strict data controls and role based access.
Using OpenAppRegistry, registries can integrate with multiple hospital-based labs and radiography departments. Doctors’ notes, multidisciplinary team reviews and automated assessment triggers can be integrated into the registry giving a longitudinal view of each patient’s disease history along with real time comparisons to health factor norms.
As a collection tool, OpenAppRegistry uses a document model to record and store all form delivered data, mimicking the paper form process. This enables ease of use for administration staff, supports our role based security model, audit trails and implementation of the clinical workflow.
Features of OpenAppRegistry include:
- Role based security access
- Patient Search
- Anoymisation & pseduo-anoymisation of data
- Patient entered encounters
- Integration with external systems (labs, biobanks, patient admin systems, other registry platforms)
- Data consent management
- Data normalisation
- Extendible for new projects, e.g., clinical trials