What is Lymphoma?
In 2019, Lymphoid cancer was estimated as the sixth most commonly diagnosed cancer in Australia. The age-standardised incidence (ASI) of lymphoma was 21.8 per 100 000 per year, with a higher rate in males. While lymphoma accounts for 5.0 % of all cancers in 2017, it was estimated to be the tenth most common cause of death in 2019. (1)
In 2012, lymphoma was estimated to account for 27,200 disability-adjusted life years (DALYs*) nationally. 23,400 DALYs were years lost due to premature death and 3,800 DALYs were years of healthy life lost due to disease, disability and injury. (2)
How Is Lymphoma Treated?
The range of treatment options has changed dramatically over the last decade resulting in improved survival for patients with lymphoma. In addition, a large number of novel and targeted therapies are under development, expanding the repertoire of agents that are likely to be available in the future. However, the optimal way to use these therapies, including combinations of agents and treatment algorithms, is yet to be defined.
Despite improved overall and progression-free survival through disease control with newer agents, a sizeable of patients with lymphoma cannot be cured and live with the burden of disease or the cumulative effect of treatments. Therefore, supportive care to maintain quality of life (QoL) is an essential part of patient management throughout the course of the disease. Furthermore, supportive care is also vital in patients with the curable disease.
How Does Research Benefit Lymphoma Treatment?
Long-term patient follow-up and review of clinical (safety and efficacy) and correlative data outside of clinical trials will be highly valuable in informing optimal treatment strategies for lymphoid cancers. Clinical registries provide a useful mechanism to collect data on patterns of treatment and variation in outcomes (both survival and QoL). They enable clinicians to benchmark against national and international standards, and allow evaluation of the translation of advances in therapy (such as the introduction of new targeted therapies) into long-term outcomes outside of the setting of clinical trials.
Aims and Objectives of LaRDR
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
Data Collection on LaRDR
Data will be collected through routine clinical visits and will not require the collection of any extra non-clinical information.
The following categories of data items will be collected:
- Health at diagnosis
- Demographic details
- Laboratory and imaging results at diagnosis
- Therapy decisions, 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
- Long-term outcomes (through data linkage with death registries).