ACSQHC-ARCR-307

The LaRDR uses existing platforms maintained by Monash University’s Department of Epidemiology and Preventive Medicine (DEPM). Data collection is undertaken by clinicians and staff at participating hospitals and private practices, with data entered into an electronic case report form (CRF) by way of a web portal.

The aims of the Australian and New Zealand Lymphoma and Related Diseases Registry (LaRDR) are to:

• Monitor access to care
• Benchmark outcomes nationally and internationally
• Explore variation in practice, process and outcome measures
• Monitor trends in incidence and survival
• Explore the factors that influence outcomes including survival and quality of life
• Act as a resource for clinical trials

Inclusion criteria:

• Patients with a new diagnosis of non-Hodgkin lymphoma, Hodgkin lymphoma, chronic lymphocytic leukaemia and related diseases
• Diagnosis within 6 months prior to HREC approval at the site, to minimise retrospective data collection.  However, more detailed retrospective data may be collected in specific sub-groups as determined by the registry steering committee. 
• Age ≥18 years
• Cause of death listed as lymphoma.

Exclusion criteria

• Patients who have chosen to ‘opt-off’ the registry.

The following categories of data items will be collected:

• Health status at diagnosis
• Demographic details
• Laboratory and imaging results at diagnosis
• Therapy decisions, including including pre-therapy benchmarking, chemotherapy, autologous and allogeneic stem cell transplantation, and maintenance and supportive therapies
• Outcomes (overall and progression-free survival, duration of response and time to next treatment and QoL measures [using the EQ-5D-5L])
• Long-term outcomes (through linkage with cancer and death registries).