What is CARE for Kids?
CARE for Kids is a longstanding, international research initiative based at Columbia University Irving Medical Center studying the genetic cause of birth defects.
What is genomic research?
Genomic research is the process of identifying genetic causes of medical conditions. At CARE for Kids, our research focuses on studying the genetic causes of birth defects through genetic testing on families affected by those birth defects.
Where can I participate?
You can participate from anywhere in the world. We have an easy process of talking with you by phone or email and then sending a kit to your home to collect a saliva sample. Alternatively, if your child receives care at one of the CARE for Kids affiliated institutes we will direct you to your local study coordinator.
What happens when I participate?
We collect of samples from the person in the family with the birth defect and both biological parents, if available. Usually, we send a kit to the home so you and your family members can provide a saliva sample. Sometimes we ask for blood or other sample types, and we work with your doctors to help collect these samples. We also will ask you questions about the medical and family history. Importantly, you do not have to travel to be part of the study and there is no cost.
What are the benefits to my family if we participate?
Your family may not directly benefit from the research study. The goal of the CARE for Kids research studies is to better understand the genetic causes of birth defects and to improve medical care. You may learn genetic information about your child’s birth defect.
Will I get results?
The CARE for Kids study is dedicated to returning all results that we think might explain the cause of a child’s birth defect. Research takes time and we don’t yet know the cause of all birth defects. Therefore, there is no guarantee that we will identify the cause of your child’s birth defect or how long it might take. If we do identify the cause of your child’s birth defect we will contact you to discuss this information.
What are the risks to participation?
There are no risks to providing a saliva sample. Sometimes we ask for a blood sample. There is a slight risk for pain and bruising at the site of blood collection. In all research studies, there is a risk for loss of confidentiality. This means someone who is not part of the CARE for Kids team has access to your identifying information such as your name or email address. We take confidentiality very seriously and have multiple checks and balances to ensure that this risk is small as possible.
Is there a cost?
There are no costs to you or your family. We will send you everything you need to participate as well as cover shipping costs.
How is my data kept safe?
After we receive your samples and medical information, we will assign a study ID number. Your identifying information such as your name and email address will not be kept with your medical and genetic information. This process helps to ensure the safety and confidentiality of your data.
How can I participate?
Email us at firstname.lastname@example.org