Page last updated April 14, 2026
Study Design: Other, Mixed method study - has a prospective cohort
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Anitha John
Institution: Children's National Hospital
PCORnet® Network Partner: PEDSnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2024
Study Duration: 2024 – 2028
Participating PCORnet® Clinical Research Networks: OneFlorida+; PEDSnet, REACHnet, STAR
Therapeutic Area: Cardiovascular
Status: Recruiting
Research Question(s):
1) What are the engagement strategies needed for individuals living with NDD and CHD?
2) What metrics (such as surveys, focus groups, etc.) can be employed to measure engagement in individuals living with NDD?