CARES
Our Mission
The goal of the Cares Study is to enable research that seeks to learn more about childhood conditions by obtaining and safeguarding previously collected biological samples. The samples we are asking permission to collect include stored Newborn Blood Spots and leftover diagnostic material, if available. Additionally, we ask participants to complete a brief questionnaire and release medical records. There is no travel needed for this study.
Who is conducting this study?
The study is being led by Dr. Erin Marcotte and Dr. Lucie Turcotte from the University of Minnesota. Researchers at Children’s Minnesota and Mayo Clinic are collaborators.
Who can participate in this study?
Any child who:
- Was diagnosed with a childhood illness or condition
- 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.
- Release medical records from the birth and treatment of your child. This includes releasing their birth certificate and treatment records in addition to completing a brief questionnaire about pregnancy, birth, and your child’s early life.
Optional aspects include:
- Submit a saliva sample and baby teeth, if available. In special circumstances, biological parents and siblings may be eligible to submit samples.
- Allow study information to be placed in scientific databanks. 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 serious diseases (metabolic conditions) in newborns. Some states have stored the dried spots in case they could be used in the future. Many states will send researchers some of the leftover blood spot, but only with the parent's written permission. The blood spots are interesting to researchers because they provide a snapshot of a child’s health and environment at the time of birth. If you agree by providing your written consent, we will contact the state where your child was born and ask for the blood spot.
Why is this research being done?
By looking at newborn dried blood spots we hope to learn more about 1) why childhood conditions 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 United States has dried blood spots taken shortly after birth to test for metabolic conditions. These blood spots are extremely valuable for understanding childhood conditions. They can help us understand what causes certain conditions and whether there are ways to detect the conditions earlier. Unfortunately, many states destroy the blood spots after a few years. With your permission, we hope to collect newborn blood spots to learn more about serious childhood conditions.
How is the saliva sample collected?
We ship you a box that includes all materials, including instructions on how to collect the saliva. Feel free to call us while you’re collecting it as well and we can be on the phone with you and walk you through the steps. Then, you return the sample to us using the enclosed envelope. We cover all shipping costs, and we will send an extra gift card to compensate you for taking the time to complete this step. No travel is required.
What if my child hasn’t lost any teeth (or I currently don’t have any teeth available), but I expect my child will lose some soon?
No problem! We can send you the container for teeth ahead of time. You can return it once you have teeth to return.