The decision to enter a clinical trial is an important one. You will need to think about the impact on your child and family.

 Benefits

• 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

• 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. 

 What to consider

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.  What the treatment is, how it works and what the investigators hope it will do. 

Things you might discuss with your child's healthcare team:

• 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.