Little boy and his teddy bear after a chemotherapy treatment

Background

Lymphoid cancer in Australia has an age-standardised incidence (ASI) of 21.4 per 100 000 per year, with a higher rate in males, and a median age at diagnosis of approximately 65 years.[1]  While lymphoma accounts for 4.5 % of all cancers, it is the fifth most common form of cancer in terms of prevalence and primary reason for hospitalisation in Australia in 2010-11.1

In 2012, lymphoma was estimated to account for 27,200 disability-adjusted life years (DALYs*) nationally; of these, 23,400 were years lost due to premature death and 3,800 were years of healthy life lost due to disease, disability and injury.

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 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 curable disease.

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 introduction of new targeted therapies) into long-term outcomes outside of the setting of clinical trials.

[1] Australian Institute of Health and Welfare & Australasian Association of Cancer Registries 2010. Cancer in Australia: an overview, 2010. Cancer series no. 60. Cat. no. CAN 56. Canberra: AIHW.

 

AIMS AND OBJECTIVES

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

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.

Partnerships

Coming soon