PurposeThe Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia.ParticipantsIt supports four cancer modules: pancreatic, oesophagogastric, biliary and primary liver cancer. The pancreatic cancer (PC) module was the first module to be implemented, with others being established in a staged approach. Individuals are recruited to the registry if they are aged 18 years or older, have received care for their cancer at a participating public/private hospital or private clinic in Australia and do not opt out of participation.Findings to dateThe UGICR is governed by a multidisciplinary steering committee that provides clinical governance and oversees clinical working parties. The role of the working parties is to develop quality indicators based on best practice for each registry module, develop the minimum datasets and provide guidance in analysing and reporting of results. Data are captured from existing data sources (population-based cancer incidence registries, pathology databases and hospital-coded data) and manually from clinical records. Data collectors directly enter information into a secure web-based Research Electronic Data Capture (REDCap) data collection platform. The PC module began with a pilot phase, and subsequently, we used a formal modified Delphi consensus process to establish a core set of quality indicators for PC. The second module developed was the oesophagogastric cancer (OGC) module. Results of the 1 year pilot phases for PC and OGC modules are included in this cohort profile.Future plansThe UGICR will provide regular reports of risk-adjusted, benchmarked performance on a range of quality indicators that will highlight variations in care and clinical outcomes at a health service level. The registry has also been developed with the view to collect patient-reported outcomes (PROs), which will further add to our understanding of the care of patients with these cancers.

Overall, the results indicate primarily positive functional outcomes for children and young adults receiving bilateral implants at all ages, including when the delay between implants is long. The results are important for evidence-based preoperative counseling, which helps families to make informed decisions and develop appropriate expectations. The results are also important for the development of clinical management practices that support and encourage the minority of recipients who have difficulty adapting to bilateral implants or achieving full-time use.

Thirty-six participants with bilateral cochlear implants aged 1–19 years completed a left versus right loudspeaker identification task. The majority performed at chance in the unilateral condition (n = 24) and significantly above chance in the bilateral condition (n = 28). Cluster analysis identified three groups; one group performed above chance in both conditions and was older at second implant and older at testing, with longer delay between implants. There were no such differences between the group performing at chance in both conditions and the group which scored highly in the bilateral condition only, thus demonstrating a bilateral benefit. Unilateral, but not bilateral, scores were correlated with age at second and at first implant, time between implants, and age at testing. Bilateral benefit was negatively correlated with age at second implant, time between implants and age at testing. Co-linearity made it difficult to isolate the relationships with demographic factors, though age at testing may have had the most influence on unilateral scores. Spatial hearing skills with bilateral implants cannot be predicted for individuals.