Introduction
Clinical trials are fundamental to establishing if new cancer treatments or new ways of using existing therapies, diagnostic tests, preventative or supportive interventions are effective and safe and they help generate the evidence for best-practice cancer care.1
Patients enrolled in clinical trials tend to have better outcomes in terms of quality-of-life and survival, most likely due to greater adherence to guidelines and protocols by clinicians.2
The number and proportion of adult cancer patients enrolled in clinical trials is currently not known in Australia. As a result, an understanding of unwarranted variation in clinical trial participation between population groups is also not known. For example, research from the United States suggests that clinical trial participation varies significantly by age and ethnicity.3 The lack of similar Australian data means that opportunities for policy approaches to increase clinical trial participation are currently not supported by a strong evidence base.
There are three clinical trial participation indicators: Adults, Children, and Adolescents and Young Adults (AYA). Participation is measured separately for each age group and by cancer type.
Adults
Evidence from other developed countries suggests that clinical trial participation rates for adult cancer patients are relatively low across the population. For example, the participation rate ranged from 0.2% to 6.6% of cancer patients across Canadian provinces in 2014,2 while the rates were higher in the United Kingdom at 14% in 2006.4
Children
Cancers prevalent in children (aged less than 15 years) tend to differ from adult cancers, being more likely to affect fast-growing tissues such as blood, lymph, bone marrow, nervous tissues, muscles, kidney, liver and bone.5 Due to these differences, paediatric cancer clinical trials are important in identifying safe and effective treatments.2 Previous research suggests that paediatric cancer clinical trial participation tends to be higher than for adults.6
Adolescents and Young Adults
Research from the United Kingdom indicates that enrolment of adolescents and young adults aged 15–29 years (AYA) is lower than that of children aged under 15 years.6,7 This may be due to AYAs cancer patients falling into a gap which sits in-between paediatric and adult cancer care.6
Data availability
There are currently no national data available for this indicator. Cancer Australia is continuing engagement with jurisdictions and the clinical trial sector to progress reporting of the agreed measures for this indicator.
Information about the measure(s):
The recommended measures for clinical trial participation at the national level are:
- Proportion of adult cancer patients participating in clinical trials, by cancer type
- Proportion of paediatric cancer patients participating in clinical trials, by cancer type
- Proportion of adolescent and young adult (AYA) cancer patients participating in clinical trials, by cancer type
Numerator: Number of patients enrolled in cancer clinical trials
Denominator: Number of incident cancer cases
Links to other content:
Cancer Australia – Australian Cancer Trials – current cancer trials and information for consumers
National Health and Medical Research Council – Australian Clinical Trials
NHS England – National Institute for Health Research
Data:
Canadian Partnership Against Cancer - Adult clinical trial participation data
Canadian Partnership Against Cancer – Paediatric clinical trial participation data
References:
1. Australian Clinical Trials. What is a clinical trial? Available here.
2. Canadian Partnership Against Cancer. 2016. The 2016 Cancer System Performance Report. Toronto: Canadian Partnership Against Cancer.
3. Murthy VH, et. al., Participation in Cancer Clinical Trials Race-, Sex-, and Age-Based Disparities JAMA; 2004, 291(22):2720-2726
4. Sinha G 2007. United Kingdom becomes the cancer clinical trials recruitment capital of the world. J Natl Cancer Inst. 99(6): 420.
5. Cancer Australia. 2020. Children’s Cancer. About children’s cancer? Available here.
6. Fern LA et al. 2008. Rates of inclusion of teenagers and young adults in England into National Cancer Research Network clinical trials: Report from the National Cancer Research Institute (NCRI) Teenage and Young Adult Clinical Studies Development Group. British Journal of Cancer (2008) 99, 1967–1974.
7. Fern LA et al. 2014. Available, accessible, aware, appropriate, and acceptable: a strategy to improve participation of teenagers and young adults in cancer trials. Lancet Oncol. 15: e341–50.