Patient Registries

Patient Registries

OpenApp has developed a number of registries for rare and chronic diseases. While all diseases have their own requirements and nuances, they have a common need to asses patient care, improve care pathways and encourage research to further understand their disease and perhaps, undergo clinical trials. OpenApp’s flexible platform supports end to end requirements.

Registry Goals

The information is used to measure, survey and compare aspects of a condition and its treatment in participating countries or centres, to deepen the understanding of the condition, to improve standards of care, to provide data for epidemiological research and to facilitate public health planning. OpenApp Registry™ is an open source platform for developing patient, disease and pharmaceutical drug registries. It supports highly secure web based data collection, reporting, sharing and anonymization of a disease’s dataset. It maximizes data re-usability and interoperability by utilizing rare disease classification codes from Orphanet, ICD-10 and Snomed CT.

Registry Features

  • Smart data collection
  • Error checking and validations
  • eCRF
  • Patient portal
  • Clinical Portal
  • Data Management Portal
  • Reports
  • Dashboards
  • Data Analytics
  • Data export & import
  • Query builder
  • Audit trail – every action logged
  • Patient Reported Outcome Measures (PROMS)
  • Studies and cohorts
  • Data verification
  • Electronic case book sign off

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