What should I ask?

These are some of the questions you may like to ask before deciding whether to take part in a clinical trial. Your doctor or nurse will probably have answered many of them when they told you about the trial. First, some general questions:

What is the point of the trial and how will it help people?
What is the trial called?

You should feel satisfied that the trial is worthwhile and that it is asking a useful question for future treatment.

How long will it be before the results of the trial are known?

It may be some time before the results of the study are available. It is not unusual for trials to take years rather than months. While doctors may see quite soon whether more patients respond to a new treatment, it will take much longer to see how long the response will last.

Can I withdraw at any time?

The answer is always ‘yes’.

Here is a selection of practical questions you may want to ask, to which there are no right or wrong answers. You just need to be sure that you are happy with any demands that the trial will make on you.

How much of my time will be needed?

Will I need to take extra time off work?

Will I need extra help from family and friends?

Does the research budget cover the cost of my fares to and from the trial centre? If so, how can costs be reclaimed?

What extra tests will I have?

Will I have to fill in questionnaires or keep a diary?
Sometimes questionnaires are simple tick-box lists; sometimes you can record your answers on audiotape.

What are the possible side effects of my treatment?

How may the treatment affect me physically and emotionally?

Who can I contact if I have a problem? Will someone be available 24 hours a day?