Australian and New Zealand Lymphoma and Related Diseases Registry

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The primary purpose of this study is to provide long-term patient follow-up, and review of clinical and correlative data outside of clinical trials. Who is it for? The registry will collect information on patients, with a new diagnosis of non-Hodgkin lymphoma, Hodgkin lymphoma, chronic lymphocytic leukaemia and related diseases. Study details Treating clinicians at sites will identify patients at the time of referral and enrol them to the study. The following categories of data items will be collected to the LaRDR database using a web portal: •Health at diagnosis •Demographic details, including name, date of birth, sex, genetic ethnicity, postcode •Laboratory and imaging data such as blood test, tissue results, radiological and molecular imaging images and reports •Therapy decisions, including no therapy (‘watch and wait’), pre-therapy benchmarking, chemoimmunotherapy, novel agents, autologous and allogeneic stem cell transplantation, and maintenance and supportive therapies •Outcomes, including details of any relapse, complications (of therapy or condition), disease progression, overall survival, duration of response, time to next treatment, QoL and patient-reported outcome measures [using validated questionnaires]) •Long-term outcomes (through linkage with health-related datasets or registries, including those held by government agencies, for the purposes of health research). It is hoped that the findings from this study will identify patterns of treatment and variation in outcomes, for survival and quality of life. Findings will be valuable in informing optimal treatment strategies for lymphoid cancers and assist with evaluation of the translation of advances in therapies outside the setting of clinical trials.

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