An example of a successful interoperable Internet-based rare disease registry for multiple stakeholder use in dispersed geographic regions
An article appearing in Human Mutation describes the successful design and implementation of an Internet-based rare disease registry, delineating how the open source system, interoperable with other networks and systems, has successfully been adopted for specific rare diseases in Australia, enabling clinicians and trial sponsors to efficiently identify patients for specific studies in a secure, privacy protected environment. Consult the PubMed abstract
