As parents, we all want our children to feel a sense of purpose and belonging, but sometimes it’s hard to know how to provide those opportunities. For me, enrolling my son in clinical trials ended up being just that—an unexpected opportunity. The experience not only helped him gain valuable insight and perspective but allowed him to contribute to something greater.
Clinical trials sound so daunting—just the idea of them has so many parents recoiling as they feel clinical and sterile. Plus, as a mother, the safety and well-being of my children are always at the forefront of my mind. It’s why organizations like The Institute for Advanced Clinical Trials for Children (I-ACT) are necessary and important in their commitment to advancing children’s clinical trials. Especially when you consider how it takes 15 years to complete a pediatric drug development program and nine years from adult approval for a pediatric label even to be made. This is quite alarming.
That being said, as a parent, it’s important to do your research and ask a lot of questions. Once you know the facts, it becomes less intimidating, and it’s a unique opportunity that allows children to contribute to science and be part of something bigger.
And there are a lot of opportunities outside of pharmaceutical-based trials. Social and activity-based studies have a similarly critical role—that’s the type my son initially enrolled in. We started with research studies for toys—my son loved trying out new toys for consumer research. But being a part of something scientific and contributing to something larger was really interesting to him, so we decided to try a clinical trial.
My son has participated in the Adolescent Brain Cognitive Development (ABCD) study for the last six years, starting when he was 10 years old. The process for the ABCD trial involves a few things. We speak with the researchers four times a year, one conversation with the participant and one with the parents. They ask personal questions, but the answers are kept confidential unless they’re life-threatening. And then, my son undergoes an MRI once a year. It all takes about two–three hours.
I can admit that I was hesitant at first. I spent hours researching potential risks that might be associated with undergoing multiple MRIs. But, I overcame my fears after realizing my concerns were unfounded. And now, six years into it, my fears have not only subsided, but I’ve also been pleasantly surprised by the continued interest my son has shown in being a part of the ABCD study and how it has contributed to his sense of commitment.
He enjoys attending his regular MRIs and answering questions about his life and experiences, as he knows he is contributing to something meaningful and scientific. Also, in some ways, enrolling my son in a clinical trial has brought us closer together. Through the process, my son has been open with me about his experiences, even the uncomfortable ones. The questions he’s asked during the quarterly check-ins and yearly MRIs have allowed us to have conversations we may not have had otherwise.
What’s also exciting is that after witnessing my son go through the trial, my daughter wanted to participate in one too. So she joined a trial that studied the effects of exercise and nutrition on children and their dogs. Although we struggled to complete all the trial requirements, she enjoyed monitoring her and her dog’s exercise and seeing how the two were linked. They both feel proud of themselves for being a part of something that could positively impact the world.
Participating in clinical trials isn’t for everyone, and it’s crucial to do proper research before signing up. However, for us, it’s been a great opportunity to contribute to scientific advancements and feel like we’re a part of something meaningful.
Missy Gibson
Missy Gibson is a former touring musician, wardrobe stylist, and mom of two amazing children in Los Angeles, California. She’s an advocate for supporting clinical trials and furthering the advancement of children’s healthcare. In her spare time, she still sings, writes, and records music and also plays in three bands.
