Before deciding whether to have your child participate in a research study, it might be helpful to look at some of the ongoing responsibilities you will have as a parent.
There are many different types of studies. For some studies, you may only need to bring your child to the hospital, clinic, or doctor's office once. Other studies require frequent visits. Some research studies last one day while others may go on for several years. For planning purposes (both for your child and the rest of your family) it's important to know what the total commitment will be. How many study visits will you need to make, and when? Will there be any extra costs involved, such as parking, or day care for your other children? Will the study sponsor or your insurance pay for the experimental treatment, or do you need to pay for it yourself?
You will also need to make sure your child is following the treatment instructions you are given. To make the study meaningful, and for the safety of your child, the treatment instructions must be followed exactly as prescribed.
You may also have to monitor your child's condition during and after treatment. Depending on the study, you may receive detailed information about:
* Potential side effects
* Which side effects require immediate attention
* And how side effects should be reported.
Sometimes they are reported to the investigator and sometimes your child's personal doctor should be notified as well.
Finally, you may be asked to fill out paperwork -- sometimes on a regular basis. For example, you may need to describe your child's health and symptoms, keep track of when medications were given, rate your child's quality of life, and record other important information for the study. It's important to do the paperwork on time and as completely as possible to make the findings of the study most meaningful.
By talking with the research team, you can better understand what your specific responsibilities will be.