Frequently Asked Questions (FAQ) about cancer in children and adolescents.
What is a clinical trial?
A clinical trial is a type of research done by doctors whose aim is to confirm the safety and effectiveness of new promising treatments, in our case addressing paediatric tumours. Scientists and doctors are always developing innovative, more effective and less toxic treatments to improve patients’ survival and quality-of-life, and many treatments of today are the result of past clinical trials. In cancer research, some clinical trials are aimed at evaluating new drugs, while others optimize different therapeutic approaches including surgery, radiation therapy and combination of drugs already on the market. With any new drug or treatment, there can be risks as well as benefits: this is why clinical trials are closely monitored and usually conducted in hospitals.
A Guide to Clinical Trials – For young people with cancer and their parents (brochure created within the EU funded ENCCA project).
Why should my child undergo a clinical trial?
Cancer patients take part in clinical trials for many reasons, but mainly to have the opportunity to receive the most effective and up-to-date treatment for curing their disease. Sometimes, they may even want to contribute to a scientific effort that can help others in the future. All patients in a clinical trial, and especially children, are closely monitored during the trial and after. They have the guarantee to become part of an international network of clinical trials. Within this network, doctors and researchers pool their experience to share their knowledge about cancer treatment.
Who can join a clinical trial?
Before your child, you and the doctor make a decision about the treatment, the type of cancer has to be diagnosed and “staged” to establish the extent of the disease. Staging tells whether the disease has spread and how far, and deciding on treatments depends on this and on the general health of your kid. Your child would mostly be referred to a trial by his/her doctor or by a doctor who knows his/her case. The eligibility criteria are different from trial to trial, and may include age, gender, type and stage of cancer, medical history or prior cancer treatments; this helps to exclude patients who might be harmed by a treatment.
What is it like to receive treatment in a clinical trial?
Your child will receive his/her treatment in a cancer centre, hospital, clinic or a doctor’s office. He/she may need to meet with a team of health professionals during the study and may have more frequent tests and visits, to follow his/her progress, ensure his/her safety and collect data. He/she will be given a treatment plan to follow and you may be asked to fill out forms to evaluate his/her feelings, pain and symptoms. Throughout the trial, the doctor who normally follows your child’s health will be kept informed of his/her progress.
What are the important questions you need to ask?
You need to understand what is going on to make the best choice for your child. You are not alone: doctors, nurses, social workers, family, friends and other patients can help you think about it and decide what is best for you. In order to make a good choice, you should discuss the different options with medical experts around you, and ask important questions such as:
- Why is this trial being done?
- What kind of tests and treatments will the trial involve?
- What is it likely to happen in my child’s case, with or without this new treatment?
- What are the other options for my child, their advantages and disadvantages?
- How could the trial affect the daily life of my child?
- How often he/she will have to go to the hospital or clinic?
- What if he/she has other medical problems besides cancer?
- How long will he/she be in the trial?
- Will he/she have to be hospitalized? If so, how often and how long?
- Will there be any additional costs as compared to the standard treatment? Will any of the treatments be free?
- If he/she is harmed as a result of the research, which treatment or compensation would we be entitled to?
- What type of long-term follow-up care is part of the trial?
- Who is legally responsible for this trial (the sponsor)?