PATHFINDER-CHD: prospective registry on adults with congenital heart disease, abnormal ventricular function, and/or...

Area of Science:

• Cardiology
• Public Health

Background:

• Adults with congenital heart defects (ACHD) represent an underserved population with significant lifelong physical and psychosocial challenges.
• Heart failure (HF) is a major cause of morbidity and mortality in ACHD patients, necessitating specialized care.

Purpose of the Study:

• To establish the prospective PATHFINDER-CHD registry for comprehensive data collection on HF in ACHD.
• To improve understanding and management of HF in ACHD, informing treatment strategies and interventions.

Main Methods:

• A multicenter observational study across German university facilities specializing in ACHD.
• Prospective data collection on real-world treatment, clinical trajectories, and outcomes in ACHD patients with or at risk for HF.

Main Results:

• The registry will capture diverse patient data, including those undergoing various cardiac therapies, surgery, or transplantation.
• Longitudinal data acquisition will track disease progression and treatment impacts in real-time.

Conclusions:

• The PATHFINDER-CHD Registry will provide crucial insights into HF management for ACHD patients.
• This initiative aims to bridge knowledge gaps, enhance patient care, and guide future research in this field.