The BabySeq Project is a research study exploring the use of genome sequencing in newborns.

Genome sequencing is a special kind of genetic (DNA) testing.

It can help find changes that cause health risks.

What is BabySeq?

This video will help you learn about the BabySeq Project and if you might want to participate. Then, you and your family can choose to join the study or not. It’s up to you!

For English speakers

For Spanish speakers

  • Who Can Join?

    Parents or guardians of any baby under 12 months old, IF:

    • You speak English or Spanish

    • You are over 18 years old

    • Your baby’s doctor has already joined the study at one of our participating clinics

  • We need YOUR help!

    • BabySeq is working to expand genetic research to help all communities.

    • We are working with a diverse group of community members throughout every step of the study.

    • Please talk to your doctor if you have questions about this research or suggestions to make it better.

  • Why Take Part?

    • You will learn more about health risks that might run in your family.

    • You could learn important ways to help prevent or treat future health problems.

    • This can help improve care for babies, families, and communities in the future.

Participating Clinics:

Birmingham, AL

  • Children’s of Alabama Primary Care Clinic

  • Children’s of Alabama Over the Mountain Pediatrics

Boston, MA

  • Boston Children’s Hospital Primary Care Center (CHPCC)

Detroit, MI

  • Corewell Health Children’s Hospital

Madison, WI

  • University of Wisconsin-Madison

Miami, FL

  • University of Miami

Minneapolis, MN

  • Children's Minnesota

New York, NY

  • Mount Sinai Pediatric Associates Practice

Philadelphia, PA

  • CHOP Karabots Pediatric Care Center

Timeline

  • Visit 1

    • Sign a consent form

    • Family History

    • Complete Survey #1

    • Heel stick (some babies)

  • Visit 2

    • Get results

    • Complete Survey #2

    (4 months after Visit 1)

  • Survey

    • Complete Survey #3

    (6 months after Visit 2)

  • Future Follow-up

    • We may ask you to complete an additional survey or interview in the future

If you choose to join the study:

  • All families will meet with a genetic counselor.

  • We might collect a small amount of blood from your baby’s heel.

  • Your baby might have a DNA test called “genome sequencing.”

  • You and your baby’s doctor will learn about your family history and any genetic results.

  • You will fill out 3 surveys over 1 year and receive up to $150.