Published Studies
Exploring PTSD in Adults with Congenital Heart Disease: Identifying Risk Factors, Prevalence, and Resilience to Overcome Stressors
This multi-phase project aims to characterize the mental health complications that are often seen alongside a diagnosis of CHD. Multiple study approaches will seek to describe how adults with CHD experience mental health issues, what types of diagnoses are most common (anxiety, depression, PTSD, etc.), and what elements of living with CHD may place someone at higher risk. By describing these factors, we hope to advocate for improved access to high-quality mental health care as a standard component of CHD treatment.
CHD & Maternal Health: Empowering Patients to Improve Outcomes Through Engagement and Research
Principal Investigator: Anushree (Anu) Agarwal, MD, M.A.S.
Adult CHD (ACHD) patients not receiving specialized ACHD care are at increased risk for cardiovascular issues as they age. Most of the research describing reasons for not receiving ACHD care (e.g., feeling well, moving and not connecting with a new provider, insurance, and distance from the care center) have been limited to a few regions of the US, which may not represent all patients with CHD. The CHI-RON study offers a larger number of patients from all across the country so that we can examine what demographic, medical, and mortality differences exist among patients who are and are not receiving ACHD care.
This capacity-building consortium channels diverse voices in the CHI and the CHD community, focused on improving maternal health outcomes for people with CHD. Our goals were to create an infrastructure for future comparative effectiveness research focused on maternal health and CHD while building a roadmap with short-term and long-term goals to decrease maternal morbidity among people with CHD.
Principal Investigator: Anitha John, MD, PhD
Identifying Key Factors to Improve ACHD Care Engagement
Adult CHD (ACHD) patients not receiving specialized ACHD care are at increased risk for cardiovascular issues as they age. Most of the research describing reasons for not receiving ACHD care (e.g., feeling well, moving and not connecting with a new provider, insurance, and distance from the care center) have been limited to a few regions of the US, which may not represent all patients with CHD. The CHI-RON study offers a larger number of patients from all across the country so that we can examine what demographic, medical, and mortality differences exist among patients who are and are not receiving ACHD care.
Principal Investigator: Jamie L. Jackson, PhD
CHD and Understanding Gaps in Care to Reduce Gaps Through Patient Engagement
Real-World Prevalence, Practice Patterns and Outcomes of Endocarditis Amongst Adult Patients with Congenital Heart Disease
Principal Investigators: Dan G. Halpern, MD and Jasmine Grewal, MD
Principal Investigators: David J. Harrison, MD, Jamie L. Jackson, PhD
CHI Patient Reported Outcomes Overview
Principal Investigator:
Matt Lewis, MD
Top CHD Research Priorities
In 2024, the CHI Research Rumble engaged 9,403 individuals living with CHD to prioritize research topics. The top five focus areas included:
1. Long-term effects of surgical interventions.
2. Mental health and neurocognitive impacts.
3. Efficacy of CHD treatments.
4. Mental health challenges in CHD patients.
5. Genetic research for personalized care.
Click here to explore the full report.