Current Research Studies

The impact of Fontan circulatory failure, frailty, and resilience on heart failure and transplant outcomes


What is the goal of the study?

Rationale: Fontan circulatory failure (FCF) is a chronic disease state resulting in heart failure and widespread, multisystem, end-organ disease that often necessitate heart transplant, however, survival after transplant for FCF is worse than other types of heart disease. Neither specific FCF factors nor the influence of individual physical or psychological adaptation to FCF-induced chronic disease, specifically frailty and resilience, are characterized leading to marked deficiencies in understanding how FCF impacts post-transplant outcomes. Aims: Aim 1: Elucidate the key FCF factors associated with HTx outcomes. Aim 2: Define the impact of frailty and resilience in modifying other FCF risk factors and influencing outcomes. Anticipated Methods: Using modified Delphi methodology, our 16 center collaborative will design ordinal, severity stratified consensus definitions for all multisystem FCF traits. Using this framework, a retrospective cohort study will collect patient and FCF data for patients listed for heart transplant over the last 10 years. Traditional risk modeling and machine learning random forest algorithms will define associations of FCF factors on heart transplant survival and morbidities. Simultaneously, frailty and resilience testing will be prospectively collected for all new Fontan transplant evaluations, characterized across the FCF cohort, and included in repeat risk analyses. Major Milestones: By study’s end, this collaborative research will result in published manuscripts on 1) our novel evaluation system for FCF, 2) a markedly improved understanding of FCF factors and their influence on post-HTx survival, 3) detailed characterizations of frailty and resilience in FCF patients, and 4) the impact of frailty and resilience on survival and other FCF factors.

Who can participate in the study?

Please contact the study team listed below to learn more.

Study Team: