There are many things to think about before deciding to take part in a research study. Here are answers to some commonly asked questions.
Before a new medication or treatment can become a standard practice of care it must go through research phases.
Each research phase must:
It is useful to know what phase the study is in to help you understand the goals of the research. A person from the research team will be able to tell you this information.
Taking part in research can look a lot like the regular medical care your child receives at a doctor’s office, clinic or hospital. Sometimes doctors also do research. It is important to talk with your doctor and the research team about the differences between the research and your child’s regular medical care.
In medical care, the doctor or your care team develops a plan of care tailored for your child.
When your child takes part in a study, the research team follows a set plan called a study protocol. The goal of research is to add to medical knowledge that might lead to improved treatments for children in the future. Your child might or might not benefit directly from being in a research study.
Learn more on the How to Participate in a Research Study page.
Safety is our main priority at Seattle Children’s. All studies follow strict regulations and guidelines:
Before your child joins a study, the research team will explain any risks of participating. The potential risks and potential benefits are listed on the consent and assent documents that you and your child will review with someone from the research team before joining a study.
Being in a study is voluntary. Your child can stop participating in a study at any time without it affecting your regular medical care at Seattle Children’s.
You might be asked to fill out a survey to share why you decided to stop taking part in the study. Filling out the survey is voluntary.
Yes. Your child will go to any scheduled medical appointments while in a study.
It’s important to tell your child’s doctor that your child is in a research study. Ask your doctor to talk with the researcher team to make sure there is no conflict with the medicines or treatments your child is currently taking.
We have worked with many families from around the country and the world, and have many services in place to help support you if you are coming from elsewhere. These include:
It depends on the study. Some studies can be as simple as filling out an online questionnaire. Other studies require you to come in for regular study visits.
Most of the time, patients need to receive study treatments at Seattle Children’s. Sometimes treatments — or at least some parts of treatment — can be safely given by your child’s doctor or a specialist close to home. We are happy to talk with you and your local doctor about whether this might be an option for your child.
If a study is of interest to you, contact the person listed to find out more information. They can help you determine if your child is a good fit for a particular study.
The answer depends on the trial.
In a phase 3 trial, neither you nor the research team will decide which treatment your child gets. A computer program will randomly assign your child to one group or the other. Researchers do a phase 3 study when they have reason to think the experimental therapy may be at least as safe and effective as the standard. But there is no guarantee – they are doing the study to find out.
When your child takes part in a research study here, a team of people provides the many types of care your child may need aside from the treatment being studied. You may be connected with professionals from many other areas of the hospital, such as nurses, dietitians, child life specialists, social workers, pharmacists, palliative care specialists and others. We have a large network to help support your child and your family.
Taking part in research can raise financial questions for families. You might wonder: “Do we get paid to take part in a study? Do we have to pay for study treatments? Will our insurance pay?”
Patients and families usually do not get paid to take part in cancer clinical trials at Seattle Children’s.
In phase 1 and phase 2 studies of drugs, usually the drugs are provided at no charge. If your child has health insurance, the benefits may apply to other costs related to your child’s care.
Our staff is experienced at working with families and insurers to advocate for coverage. We can help you find out what your insurance will cover. You may also pay for care yourself or apply for financial assistance. Our social workers can also connect you to organizations that offer support to help meet the costs of care.
Find out how Seattle Children's researchers are making a difference.