Table 1.

RDR Checklist

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

Rare disease registry development RDR Checklist.