Patients change the future of kids’ health care

Have you ever wondered how it is that we know so much about many of the injuries and illnesses that occur in children? Did you ever think about how a medication was developed to treat cancer, epilepsy, asthma, attention-deficit/hyperactivity disorder or Crohn’s Disease? How in the world did physicians figure out how to treat and repair heart defects in newborns?

The answer is clinical research. You are very important in the effort to discover causes and cures for the medical issues we deal with every day at Children’s Hospital of Wisconsin.

Children are not just small adults. They are quite different in how they act, think, get sick or injured and respond to treatments. Still, the majority of our treatments used in sick kids only have been clinically proven in adults. The rules for clinical research have, until recently, not allowed much drug testing in children. As a result, most drugs used in kids today are just lower doses of adult medications.
As we have learned over time, kids and adults don’t always respond to medication the same way. While it may seem dangerous to try a drug not approved in children, it simply is that there are very few other options. Until we do the research with children to find out if a drug works and is safe, physicians have to do what they think is best for the sick child with the treatments available.

In order to deliver the best care to children, we have made research a critical part of the mission at Children’s Hospital. We do research at Children’s Research Institute to help identify the causes of injuries, illnesses and birth defects. We look for new ways to prevent and treat these conditions.

Some of this research is accomplished simply by filling out surveys and questionnaires, or providing a small sample of blood (often collected at the same time as clinical lab tests, so there is no extra pain involved). In other types of research, a new drug or device may be tested for the treatment of a sick or injured child. This type of research can, in some cases, get a patient access to an unproven drug or device. In some cases, when there are no other treatment options, this could be beneficial.

All research at Children’s Hospital is reviewed by our Human Research Review Board to ensure that the research is safe, ethical and scientifically valid. The HRRB is made up of physicians, scientists, non-scientists and representatives of the community. Every study is carefully considered to make sure that researchers keep the risks as low as possible, and that they have the potential to benefit pediatric care. The child/parent perspective always is taken into consideration when studies are reviewed.

Participation in research is optional and completely up to you and your family to decide. You do not have to participate, but if you choose to, what we learn from your participation may help us to better understand diseases, or find cures. If you would like to hear about research options, ask your caregivers for more information.

– Greg Anderson, manager of Research Integrity, Children’s Research Institute

Comments are closed.