National Australian home parenteral nutrition registry: Development process and initial data insights

Area of Science:

• Clinical Nutrition
• Health Informatics
• Public Health Surveillance

Background:

• National registries are crucial for monitoring home parenteral nutrition (HPN).
• Australia has developed and implemented a national HPN registry.
• This initiative addresses the need for comprehensive HPN data collection.

Purpose of the Study:

• To outline the development and implementation process of Australia's national HPN registry.
• To detail the methods, challenges encountered, and initial results from the registry.
• To establish a framework for ongoing HPN monitoring and data analysis.

Main Methods:

• A steering committee guided registry framework development with a minimum dataset.
• Key issues like resourcing, patient confidentiality, data ownership, and ethics were addressed.
• Extensive clinician and consumer engagement informed the development process.

Main Results:

• A three-tiered registry (service, patient, QOL/patient-reported data) was created.
• All 29 Australian HPN sites contributed service-level data in the first year (2024).
• Initial patient-level data revealed a line infection rate of 0.83 per 1000 days and 1.38 admissions/patient/year.

Conclusions:

• The national HPN registry enables accurate recording of HPN usage and resource allocation in Australia.
• Developing a national registry is complex, demanding significant clinician commitment and overcoming barriers like funding and ethics approval heterogeneity.
• The registry provides valuable insights into HPN services and patient outcomes.