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Researchers and families discuss the benefits of research to study participants and others.

How Children Benefit

Parents who are asked to enter their child into a study will want to know, "Will being in this study help MY child?" It is very important to understand that research is done to gain information about a disease, condition, drug or treatment that will benefit children in the future. It is different from regular medical treatment that is given to help a specific child.

So, while most studies are not done to help a specific child, does this mean there are no benefits to being in a study?

In fact, there can be potential benefits when entering a clinical study.

Helping Future Generations

One reason that parents say that they join a study is to help other families in similar situations. Today our children have more protection from death, disability and discomfort from many childhood diseases like polio or measles because parents in the past made a decision to allow their child to be in a study to test vaccines.

But still, there are many medicines and procedures that have not been tested in kids. And before they can be accepted for use, they must be tested to see if they are safe and effective.

Having Access to New Drugs or Treatments

Researchers test new drugs and treatments because they have reason to believe they might work better or be safer than the standard care. In a study, your child may have access to something that is not available yet. If the drug or treatment is found to be helpful, your child may be among the first to benefit.

Sometimes enrolling in a clinical study can give your child a chance to see extra doctors or find out more facts about your child's condition. The study team may be able to tell you about organizations, groups or websites that deal with your child's condition. A clinical study may be able to put you in touch with families going through what you are going through.

Having Closer Monitoring

A clinical study may offer closer monitoring or additional testing for your child, which may not be part of regular care. Sometimes a study asks parents to keep a diary or to bring a child in to be seen more often, such as weekly visits. Children in a clinical study will be watched closely for side effects and to understand how the treatment is working.

Whatever the reason, remember that clinical studies are designed to test if a drug or procedure works and is safe. There may be benefits for your child, but there may not be.

"Oftentimes [parents] will say, 'I thought perhaps it could help my child. But if it didn't help my child, it could help you as researchers...and could help children in the future."
Victoria Pemberton, RN, Research Nurse

"And I chose to because I wanted to do pretty much anything to help, and also help with the study to help future generations as well."
Sawyer, child in Fabry disease study

"And we wouldn't have known any of that information if we hadn't been in this clinical study. It's just a lot more options that you wouldn't ordinarily know that you had."
Britt, parent of child in chronic granulomatous disease study

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