The Early Check team understands that receiving news of a possible condition in your newborn is a stressful experience. We offer several activities designed to monitor infant/child needs and support family well-being. All of these activities are built around four pillars of anticipated needs for families: information, support, surveillance, and intervention. If an infant receives a screen positive result for an Early Check condition, they will be offered participation in short- and long-term follow-up. Throughout the whole Early Check follow-up experience, families will have access to genetic counselors, neurodevelopmental psychologists, interventionists, and child development experts.
Short-term follow up procedures include diagnostic testing to confirm the condition, genetic counseling, parent support, referrals to clinical care, and an assessment of the infant’s early development. Short term follow up is offered to any family whose newborn receives an abnormal screen on the Early Check panel.
Depending on the condition and the needs of the family, short term follow up services are offered via telehealth or at one of our partner clinical sites (the Carolina Institute for Developmental Disabilities at the University of North Carolina at Chapel Hill or Lennox Baker Children’s Hospital at Duke University).
Long-term follow up procedures include regular assessments and consultations every six months up through the child’s third birthday. These assessments focus on any concerns parents may have for their child, a comprehensive assessment of the child’s development and behaviors, and an assessment of the well-being of the family. Families have the option of having follow-up team members come to them in-home, coming to one of our partner clinics, or completing assessments virtually. Families receive a brief summary of their child’s development as well as an incentive and reimbursement for travel costs.
The Early Check Follow Up team will work closely with each family to help them connect to the appropriate clinical services for the child. Some conditions require medical interventions, others do not need immediate treatment, but require close monitoring of infant development to determine the appropriate timing to maximize therapeutic benefit. Infants with many of the Early Check conditions will be eligible for Part C Early Intervention Services.
Early Check Early Intervention Pilot Studies. In addition to helping families connect with the most appropriate intervention and treatment options for their infants, we are also piloting a targeted parent and infant intervention program that aims to develop therapeutic supports for families receiving a new diagnosis in their newborn along with educational and coaching programs to help parents identify potential symptoms and engage with their child to maximize positive outcomes.
Parents/caregivers can choose to participate in the Early Check Registry, regardless of screening status. The Registry provides the opportunities for families to be invited to take part in additional surveys about the baby’s health and development and/or about how the parent/family is doing. For those infants who screen positive information is also provided about emerging new treatments, clinical trials, or other kinds of research studies that may be of interest to families.
Parents always have the option to decline participation in any additional research study.
