Project Phase: Design

Brief Summary: Children with single ventricle circulation are at high risk for developmental delays affecting cognition, motor skills and school readiness. Although early intervention and neurodevelopmental specialist support are critical, many of these children do not receive timely services. As SV-ONE expands its focus to the post-Glenn to Fontan period, this project aims to improve access to neurodevelopmental evaluations and connect families to needed resources ultimately support better developmental outcomes and school readiness.  This project includes identifying gaps in the neurodevelopmental evaluation and referral process for children.

SMART Aim:

• Increase the percentage of patients who receive a comprehensive* neurodevelopment evaluation between the ages of 11-30 months of age.

  • *Comprehensive evaluation includes either early intervention evaluation (EI) or an evaluation in a neurodevelopment clinic in an outpatient setting 

Participation Details:  Stay tuned for an invitation packet to participate in the project in late summer 2025!

Leaders: Not yet determined

Executive Sponsor: Kiona Allen, MD

Project Development Workgroup Members:

• Linda Lambert​

• Nadine Kasparian​

• Jesse Boyett Anderson​

• Jennie Briend​

• Heather G Watson​

• Sarah Plummer

Measures: Measures for this project are under development.

Questions? Please contact info@svone.org.

How to Engage With This Project

Stay tuned for an invitation packet to participate in the project in late summer 2025!