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Table 1 RDR Checklist

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

 
  1. Rare disease registry development RDR Checklist.