The day after my daughter was born, we were asked to enroll her in a clinical study. She was perfect, just what the study needed: a healthy child to compare to children with illnesses.
Through my job, I know what is involved in clinical research. Each study has risks and benefits, and that’s what I needed to know about to make our decision. In our case, there was no likely benefit to my daughter, but there was the potential to bring benefit to any future siblings she may have. The risk was no more than a normal blood test, and my wife and I had to answer some questions. We agreed to participate because the risks were very low, and the knowledge gained from our daughter may one day help prevent illnesses in other children.
But what if my daughter was sick, and the risks were greater than a blood sample? Clinical trials for sicker children can include experimental drugs with unknown side effects. In other words, a possible significant risk. We would have a lot more to think about. What would be the pros and cons of putting our daughter in a study where she could be given a drug that may or may not work, could have more side effects and could even cost us more?
On the other hand, the clinical trial may provide her access to the newest drug that could be more effective, have fewer side effects and, in some cases, could be provided free of charge.
Clinical trials, with the help of willing participants, advance translational research at Children’s Research Institute. It’s about good science to fix children’s health problems faster.
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If you ever are asked to be part of a study, ask lots of questions. Think clearly about the risks and benefits to your child. Don’t automatically rule out clinical research. Research treatment options could be beneficial, but that is a decision you and your family have to make together as you weigh the risks and benefits.
– Greg Anderson, research integrity manager, Children’s Research Institute