Donating tissue to a research study
SickKids is famous for its research. There are many research studies that are happening at the hospital. This is one of the reasons why the quality of care is so high at SickKids. As a result, your child may be approached to participate in a research study.
There are several different kinds of research studies:
- studies that ask your child to answer a questionnaire about their condition
- studies that compare treatments, such as drugs, surgery, etc.
- studies that ask for a blood or tissue sample
The following are questions frequently asked about participating in tissue research. For any study you are approached to participate, you will receive an information form which addresses these questions.
What kind of tissue could my child donate to a research study?
There are many types of tissue that your child could donate to a research study:
- Bone marrow cells
- Biopsy (taking a small piece of tissue that is already being removed for diagnosis)
- Excised tissue (taking a small piece of tissue that is already being removed for treatment and diagnosis)
Does my child have to participate in a research study?
No, participating in research is voluntary. If you decide that you don’t want your child to be in a research study, this decision not to participate will not affect your access to care at the hospital.
Who is performing the study?
You will receive an information form listing all the doctors and researchers who work on this study. Studies may be run by several groups of doctors and researchers.
How long will my child’s tissue be stored for?
If you agree to the use of your child’s tissue, then you will be asked if the tissue can be used specifically for the research project that is described and then discarded (called “closed consent”). Or alternatively, if after the tissue is used for specific research testing, it can be stored indefinitely and used in the future for other related research projects or for new, unrelated research projects (called “open consent”).
How do I finally decide to participate?
Before you decide to participate, you will receive an informed consent form and a researcher or doctor will go through the information with you and answer any questions you may have. If the information is understood and you decide to participate, you will be required to sign a consent form.