- The decision to enter a clinical trial is an important one.
- If a clinical trial is available for your child, you will need to talk to your doctors to help make a decision that feels right for you and your family.
- This will mean thinking about the risks and benefits of the trial for your child and your family.
Risks and Benefits
The possible benefits to your child and family from being part of a clinical trial include:
- Access to new treatment that may help your child
- The hope of developing better treatments or tests for a particular condition. This means even if the trial does not benefit your child, it may benefit others with the condition in the future due to changes in how the therapy is given in the future.
Potential risks of joining a clinical trial include:
- The new treatment may not work for your child
- The trial may involve more frequent visits to the hospital
- Treatment on the trial or checkups may be unpleasant for your child
- The new treatment may cause minor or more serious side effects.
Deciding whether or not to join a clinical trial
A good place to start is discussing the pros and cons with your medical team, for example your neurologist and/or paediatrician at your next routine appointment.
Here are some things you might want to think about and discuss with your child’s healthcare team:
- What the treatment is, how it works and what the investigators hope it will do.
- How and where the trial will be run.
- What is required of your child and your family; for example: the number of visits to the hospital or local clinic, number of blood tests, or other invasive procedures such as lumbar punctures (spinal taps).
- How the treatment will be given; for example: as tablets/medicine or an injection/infusion.
- Results from previous clinical trials (if any).
- Possible side effects and/or risks of the therapy.
- Whether your child may receive a placebo.
- How satisfied you are with your child's current therapies.
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Content on this page was generated via the GenE Compass project. The following article provides more information about the project:
- Robertson EG, Kelada L, Best S, Goranitis, I, Grainger N, Le Marne F, Pierce K, Nevin, SM, Macintosh R, Beavis E, Sachdev R, Bye A, Palmer EE. (2022). Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: a mixed-method pilot study protocol. BMJ Open, 12:e063249. https://doi.org/10.1136/bmjopen-2022-063249