The overall goal of Project FIND-OUT is to facilitate early and accurate genetic diagnosis of rare genetic neurodevelopmental disorders in infants between the ages of 3-12 months in the United States.
Babies with feeding issues, problems with movement or muscle tone, or who have missed developmental milestones may benefit from genetic testing. Learn more about Project FIND-OUT, which provides free genetic counseling and testing for infants between the ages of 3-12 months, and whether your baby might be eligible.
Families who participate will receive the following free services:
By participating in Project FIND-OUT, you will contribute to an important research study on the value of genetic testing. We hope this study will lead to the development of guidelines for physicians and health insurance companies. Having guidelines may make it easier for other families to get genetic testing in the future and a genetic diagnosis in the future. Lastly, getting children diagnosed earlier will speed up access to new treatment options
Project FIND-OUT is an important research project to help parents get answers about potential genetic
causes of their child’s symptoms. Project FIND-OUT is only open to infants in the United States
between the ages of 3-12 months.
Project FIND-OUT is only open to infants in the United States between the ages of 3-12 months who have 2 or more of the below symptoms.
Any NICU or ICU admission for any reason of any duration
Abnormal differences in your child’s physical body structure
You child’s head circumference, weight, or length is “off the chart” either much smaller (below 5th percentile) or larger (above 95th percentile) than babies the same age.
Your healthcare provide has referred your baby to a specialist such as a Neurologist, Cardiologist, Gastroenterologist, Developmental Pediatrician, or Orthopedics
Your healthcare professional has referred your baby for Occupational Therapy, Physical Therapy, Speech Therapy, or other Early Intervention services
Low muscle tone, floppy baby, not able to keep knees or elbows bent, poor head control, poor reflexes
We hope to make participation in Project FIND-OUT easy for you and your family. Participation in any part of this research is voluntary. If you decide to participate, you will be asked to complete the following steps:
Is your baby between the ages of 3-12 months? If you answered yes, start by completing an enrollment form.