From: Dispelling myths about rare disease registry system development
1 . Technology choices | 4 . System design |
• Web-based or desktop application | • Customisable for |
• Relational Database or unstructured data | ○ a specific disease(s) |
• Programming Language | ○ patient registry |
• Cloud deployment vs Physical ICT infrastructure | ○ clinical registry |
• Open source vs Proprietary | • Modular design |
○ new features | |
○ new data elemets | |
○ new ontologies | |
2 . Professional Software Development | 5 . Security |
• Appropriate software project management | • De-identification process |
• Team-based software development | • Two factor authentication |
• Well-structured, commented code | • Multi-level user access |
• Version control | • Work groups |
• Issue tracking | • Encryption |
• Documentation | 6. Sustainability |
• Software deployment instructions | • Ease of exchange |
• Functional and Unit Testing | • Effort required |
• Team-based development | • Future proofing |
3. Interoperable | 7. Open source |
• Export/import functionality | • Appropriate levels of documentation |
• Webservice API | • Strategies to capture community feedback |
• Data standards | • Open and transparent installation processes |
• Ontology | • Deployment process detailed |
○ Data elements | |
○ Disease elements |