What Are Clinical Trials?
HLH is very rare, with only a very small number of patients diagnosed each year. HLH covers conditions with many causes, so each case is different, with less predictable response to treatment. Clinical trials which randomly split the patients into different groups to look at treatment effects and side-effects are thought to be the best. However, because of the small and wide ranging cases, no randomised trials have yet been able to be performed in HLH but are planned for the future.
 
Clinical trials are an essential step in the development of treatment for various diseases and are necessary for improving the outcome of patients. Clinical trials are the only way to find out if a new treatment approach to a disease is better than the standard treatments currently used. Patients volunteering to take part in a trial are randomly assigned to either receiving the standard treatment or a different or experimental treatment. This is known as a randomised trial and is the most common way in which treatments are tested. The choice of which treatment is offered to a particular patient is usually done with the help of a computer and the process ensures that the groups are similar in every way other than the fact that they receive different treatments. Any difference in outcome between the groups is then likely to be caused by the difference in the treatment and not by other differences between the groups. If an experimental treatment proves to be better than the standard treatment and does not cause unacceptable side-effects, it is recommended as the new standard treatment for future patients. This is how new treatments or approaches to treatment are introduced to patients.
 
The conduct of clinical trials is carefully regulated to ensure patients’ well-being is protected. Patients will only be able to participate in a trial if there is an open trial at that time, if they meet the eligibility criteria, and if their treating hospital is taking part. Parents and when appropriate, children must understand the implications of taking part in a clinical trial and give written consent (agreement) to allow them to be enrolled on a trial. If a trial is available to your child your doctor will explain it in more detail and you will be given the necessary information to allow you to decide whether to take part or not. While on a clinical trial your child will be very closely monitored.
 
The Histiocyte Society is a non-profit organisation whose members comprise an international group of over 200 doctors and scientists. It is committed to improving the lives of patients with disorders of histiocytes by conducting clinical and laboratory research into causes and treatment.
 
Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.
 
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