Utilizing PCORnet to support transition from pediatric to adult centered care and reduce gaps in recommended care in patients with congenital heart disease

Study Updated 03/06/2024

Study Website: Congenital Heart Initiative
ClinicalTrials.gov#: NCT05185232
Study Design: Retrospective Observational
PCORnet Infrastructure: Collaboration, CDM (+supplemental data), Engagement, Single IRB
Principal Investigator: Thomas Carton, Anitha John
Site Name: Louisiana Public Health Institute (LPHI)
PCORnet® Network Partner: REACHnet
Funder: Patient-Centered Outcomes Research Institute (PCORI)
Funding Date: 2021
Study Duration: 2021 – 2024
Participating Clinical Research Networks: INSIGHT, OneFlorida+, PEDSnet, REACHnet
Therapeutic Area: Cardiovascular
Condition: Congenital Heart Disease; Comorbidities and Coexisting Conditions
Population: 18 Years and older (Adult,  Older Adult)
Status: Active, not recruiting

Research Question(s):

1. How does receiving current recommended care affect long-term outcomes and healthcare needs amongst the numerous rare disease subtypes of congenital heart defects?
2. What factors are associated with gaps in recommended care?
3. Do patients report feeling better when they remain in specialty care?