CARES
Our Mission
The goal of this research is to learn more about why cancers develop in children and adolescents, the impact of genetic and environmental factors, and look at the presence of markers that may have been present at birth. As a part of this study we are asking for permission to collect biological specimens including newborn blood spots and leftover diagnostic material from bone marrow and/or blood slides from the young diagnosed with cancer. If it is alright with you, study staff would collect blood spots and bone marrow slides. There is no travel needed for this study. There is also medical record review and a short questionnaire that includes information related to pregnancy, events surrounding birth, and the child’s early life.
Who is conducting this study?
The CARES study is being led by Dr. Erin Marcotte and Dr. Lucie Turcotte from the University of Minnesota.
Who may participate in this study?
Any child who:
- Was diagnosed with any type of tumor or cancer
- Was born in a state that banks newborn blood spots
- Has the ability to understand English or Spanish
What is involved?
Participants will be asked to:
If you agree to participate in this study, we would ask you to sign forms that indicate your permission for the different aspects of the study. It is important to note that you do not have to agree to all aspects of the study in order to participate. The different aspects of the study include:
- Release your child’s stored biological specimens which have already been collected, including their newborn blood spots and leftover diagnostic material, if available, to us for research purposes
- Collect birth and treatment data including a brief questionnaire inquiring about pregnancy, birth, and your child’s early life as well as your child’s birth certificate and medical records related to their treatment
- Allow study information to be placed in scientific databanks. More information about this is in the “What happens to information collected for the research?” section of this form
- Allow study information to be linked to scientific data sources
- Have the study research team contact you in the future if new research opportunities arise
FAQ
What are newborn blood spots?
Newborn blood spots were created when a few drops of blood were taken at birth, placed on filter paper (also called a “Guthrie Card”), and dried. These blood spots were originally collected to check for some serious diseases (metabolic conditions) in newborns. Some states have stored the dried spots in case they could be used in the future. The blood spots are interesting to researchers because they provide a snapshot of a child’s blood biology at birth. If you agree (by providing your written consent), we will contact the state where your child was born and ask for the blood spots.
Why is this research being done?
By looking at newborn dried blood spots we hope to learn more about 1) why tumors, cancers and related illnesses develop in children and adolescents 2) the impact of genetic and environmental factors 3) the presence of markers that may have been present at birth.
How long will the research last?
Your child’s participation in this study will last until the samples have been obtained from the state of birth, you request to withdraw from the study, or the study has ended.
Why do you need my child’s newborn dried blood spot?
Nearly every child in the U.S. and Canada has dried blood spots taken shortly after birth to test for metabolic diseases. It is useful to know if cancer mutations can also be backtracked in newborn dried blood spots.