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

Many countries have established national registries monitoring home parenteral nutrition (HPN). This article outlines the development and implementation of a national HPN registry for Australia, including methods, challenges, and initial results.

Following the establishment of an HPN steering committee, a registry framework was developed with a minimum dataset. During the development phase, key issues were addressed, including resourcing, patient confidentiality, data ownership and access, and ethics requirements. Development encompassed extensive clinician and consumer engagement. The first year of data collection was 2024.

A three-tiered registry was developed including (1) service-level, (2) patient-level, and (3) quality of life (QOL)/patient-reported data, with key quality indicators within each tier. The first year of data collection saw all 29 HPN sites across Australia contribute to service-level data entry, indicating Australia has a total of 244 adults and 84 children currently receiving HPN ± intravenous fluids (IVF) and an additional 39 people receiving IVF alone. Nine sites (n = 107) contributed to patient-level data collection, with a line infection rate equivalent to 0.83 line infections per 1000 days and an average hospital admission rate of 1.38 per patient per year. Tier 3 was out of scope for the first year.

Development of a national HPN registry in Australia has allowed accurate recording of HPN usage and resourcing allocation. National registry development is complex, requiring extensive clinician commitment, particularly when financial support was not available to aid registry development and management. Both this and heterogeneous ethics approval requirements were major barriers.