Transplanting organs in children is a relatively new field and is always changing. Research helps us improve how we care for patients. We could not do it without families who take part in research studies.
It is completely up to you whether to participate. Your decision will not affect the quality of your child’s care.
Three Ways to Take Part in Research
There are 3 types of research where you can help.
Sharing information about your child
You can give permission to share information about your child’s illness and treatment with other transplant centers. Your child’s information is stored in a database under a code. It is not connected with their name or other identifying information.
Having a database with many patients lets us get a quicker picture of diseases, treatments and what works and what does not.
Studying diseased organs
Sometimes we ask permission to study your child’s diseased organ or send it to other research centers. We may also do this with fluid or tissue from your child’s body. This helps us learn more about organ failure and the effects of different diseases.
We also do studies to explore new treatments. These are called clinical trials. Patients in these studies can take advantage of new treatments before they are widely available. We can carefully test and evaluate new medical discoveries.
Seattle Children’s has a strong safety monitoring system in place to safeguard all children who take part in research studies.
Ask your doctor or nurse for help finding studies that might be right for your child. This guide to clinical studies explains more about the process.
Why Take Part in Research?
Research with children is important because:
- Many medicines and treatments today are based on what works for adults. Adult treatments may not work as well in children, who are still growing and developing.
- Children live many years after their transplants. We want their new organ to last as long as possible.
- Different medicine reminders may work better with children and adolescents than with adults.
We use what we learn in this research in everyday patient care and health-related decisions.