OpenApp Registry™ is an open source platform for developing drug, patient and disease registries. It supports highly secure online collection, reporting, sharing and anonymization of a disease’s dataset. It maximized data reusability and interoperability by utilizing rare disease classification codes from Orphanet, ICD-10 and Snomed CT. A robust consent model ensures compliance with European and US Data Protection standards. OpenApp Registry has been successfully used to develop registries such as the European Cystic Fibrosis registry and a national Orthopaedic Joint Registry.
Click here to get access to our 12 page white paper and discover more about:
- Outlines of the data impact of mHealth and teleHealth and our approach to isolating patient and clinical data
- Summarizes of the current thinking around consent, governance and data protection
- Outlines of how registries can evolve into an active disorder management system
- How The European Cystic Fibrosis Society is using our software to manage their registries across Europe
Click here for a recent Orphanet published paper which outlines some of the registry data challenges the European Cystic Fibrosis society had and how they have used our software to overcome these.
OpenApp Registry: The Evolution of a Patient Registry
Most patient registries start life as a simple spreadsheet. Over a period of time features are added to meet user demands. This evolves into a tangle of interrelated spreadsheets commonly referred to as “spreadsheet hell”.
OpenApp have years of experience in patient registries and health care data reporting and can help clients take their registry through this evolution process.
1) Single cell: Spreadsheet register (Healthcare Quality Solutions)
- Patients are columns in spreadsheet.
- Reporting is manual and challenging
- Data quality is very hard to manage
- “Spreadsheet Hell”
2) Multi cell: Multiuser
- Role based multiuser access
- Intuitive data entry: form designer
- Input validation with ICD-10, Orphanet lookup fields
- Full record searching and reporting
3) Backbone: Adding structure
- Secured confidential access
- Patient consent, governance & custodian
- Audit trails, backup and disaster recovery
- Anonymization for data sharing
4) Groups: Communication
- Cloud or on-premise hosting ; web or tablet access
- Integration with hospital labs, radiology, pharmacy
- Data reusability through compliance with coding standards; SNOMED
- Health: Patient lead date entry and Health App integration