Asthma medications. Dietary guidelines for people with diabetes. Vaccination schedules. They’re all things we take for granted when health care providers recommend them, but none of them would be possible without successful clinical trials.
Clinical trials are designed to evaluate a new or existing medication, treatment approach, or medical device for patients who have a particular condition, like obesity or heart disease. However, they’re not just about improving treatment options for future patients. On the contrary, people who volunteer to participate in clinical trials often benefit from the enhanced care that comes with being part of an important study.
Still, it’s natural to have lots of questions when you’re thinking about enrolling your child in a clinical trial. Here, we’ll try to answer some of those questions.
Will my kid be a guinea pig?
Not at all. While your child’s participation will help health care providers make more informed treatment decisions, no child in a clinical study is subject to unfounded or dangerous practices. Researchers and physicians monitor children in clinical trials very closely. All human research, including clinical trials of a drug, biological product, or medical device regulated by the FDA is reviewed, approved, and monitored by our institutional review board (IRB). This means that there are several layers of protection to ensure that the clinical trial’s practices are sound, your child is safe, and that participation is completely voluntary. You may even receive compensation for your family’s participation.
Will we still get to see our regular doctor?
Absolutely. Researchers and specialists who conduct clinical trials do not “take over” for a patient’s regular health care provider. Instead, they provide treatments that may go above and beyond the care that a child normally receives. For instance, a child or family in a clinical trial may receive many additional hours of education on their condition, which can help them understand their treatment and better manage their illness. This education typically happens with the knowledge and cooperation of the child’s main doctor.
What’s in it for us?
Plenty! Participants in clinical trials benefit from enhanced education and training on how to manage their conditions. They may also get to use specialized monitoring or treatment equipment. For instance, children enrolled may be provided medications for asthma or might take home new peak flow monitors. What’s more, the specialists and health care providers who work with patients place great emphasis on compliance and accountability. Simply put, your child may gain a much better understanding of their condition. They’ll also learn how to manage it themselves and when to ask for help. It can be a great resource to help everyone stay healthier.
If your child is a teenager who needs volunteer hours for school, your participation in a trial may count toward that requirement. (Check with your child’s school for their requirements)
What if a new treatment doesn’t work?
Your child will never be in danger of not receiving care for their condition. Instead, you may be assigned to a group of patients who take their medication as usual or, in the case of asthma, step their medications up or down. You’ll be closely monitored at all times – both by clinical researchers and a research physician.
Is it hard to enroll in a clinical trial?
Not at all. If your child is being treated for a condition like asthma, Crohn’s disease or other gastrointestinal condition, or an endocrine issue (like diabetes), there’s a good chance your family is eligible to participate in a trial. You can browse for clinical trials by location and condition at Nemours.org, or at ClinicalTrials.gov.