Page last updated February 4, 2026
ClinicalTrials.gov#: NCT05185232
Study Design: Retrospective Observational
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator:Thomas Carton and Anitha John
Institution: Louisiana Public Health Institute (LPHI)
PCORnet® Network Partner: REACHnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (project webpage)
Funding Date: 2021
Study Duration: 2021 – 2024
Participating PCORnet® Clinical Research Networks: INSIGHT, OneFlorida+, PEDSnet, REACHnet
Therapeutic Area: Cardiovascular, Rare Diseases
Condition: Congenital Heart Disease; Comorbidities and Coexisting Conditions
Age Range: 18 Years and older (Adult, Older Adult)
Status: Completed
Research Question(s):
- How does receiving current recommended care affect long-term outcomes and healthcare needs amongst the numerous rare disease subtypes of congenital heart defects?
- What factors are associated with gaps in recommended care?
- Do patients report feeling better when they remain in specialty care?