1. How will I be informed of the results of the trial?
2. If the new treatment is beneficial, am I able to get is after the trial?

How can the results be accessed?

Trials take a long time. It can take many years to recruit the numbers of participants needed for large Phase 3 trial. After the trial has finished, there is a follow-up period which can be up to 5 years or may be more in some cases. For this reason, the results of the trial that you took part in may not be available for a number of years. Sometimes, the data is analysed in an early report called an ‘interim analysis’. This may give some helpful early results. It is important that your cancer specialist lets you know the clinical trial results as soon as they become available. However, it is possible that you will need to remind your cancer specialist to give you the results of the trial.


Publishing the results

It is important that the results of a trial, whether they are positive or negative, be published in medical journals. This is so that the cancer community can find out about important results so that treatment can improve for patients. Sometimes the results of trials are presented at meetings and conferences attended by doctors and nurses involved in cancer research and care, and reported in the media. Some people find this way of hearing results distressing and confusing. 


How do you make sense of the results?It is helpful to understand the language used by doctors to describe the results of clinical trials. The common terms used are: 

• Response rate – how much of the cancer the treatment kills. If the cancer disappears for a period of time it is called a ‘complete response’. If half of the cancer disappears it is called a ‘partial response’. If it stays about the same size it is called ‘stable disease.
• Duration of response – the time it takes for the cancer to come back or start growing again
• Disease progression – this is when the cancer continues to increase in size even when you are having treatment, or a new secondary cancer is found
• Disease free survival – the percentage of people who are alive and cancer free after a specified number of years (usually 5 years)
• Overall survival – the percentage of people who are alive, with or without cancer, after a specified number of years (usually 5 years)
• Median survival – the length of time after randomisation when half of the patients are still alive.