Evaluating the Study
Deciding whether or not your child should participate in research can be challenging. To help you, we've provided some information about research in general. In this and the next section we summarize some of the questions you might want to consider as you make your decision.
When you meet with the investigators to discuss the research your child may be in, you might find it helpful to ask what the study's purpose is. Why is it being done?
The study may combine both currently accepted medical treatment AND research. If it does, you may want the investigators to explain which of the procedures or drugs your child will receive are currently accepted treatment, and which are experimental. You might also ask whether the experimental treatment has been tested before - and on whom? If so, what did those studies show?
In some studies, one group of children receives the experimental treatment while a comparison group receives either:
- No treatment
- The currently accepted treatment
- Or a placebo.
If you are considering such a study, you might ask how the children receiving the experimental treatment will be selected.
It's also important to consider how you will feel if your child receives the placebo, the standard treatment, or no treatment at all instead of receiving the experimental treatment.
Another important consideration is whether the study offers the possibility of improving your child's health. If it does, how likely it is that your child will receive such a benefit?
Remember that investigators can almost never promise that being in the study will be better than receiving standard treatment outside the study. After all, finding out the effectiveness of the experimental treatment is the reason they're doing the study in the first place.
Even if there is no direct benefit expected, some parents enroll their child in studies with little or no risk solely to help other children in the future.
Other studies do have risks. Asking questions about risk can be helpful, such as:
- What kind of risk is involved in this study?
- How likely is it that the risk will occur?
- And is there a chance that the treatment or tests will hurt, or make my child uncomfortable?
- You and your family might also consider how you - and your child - would react if the risk actually happened.
You might also ask how the risks of the study will be reduced, and how the safety of the children will be monitored.
Back: Ongoing Responsibilities as a Parent | Next: Choosing Among the Options
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