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Table 2 List of variables collected in PATHFINDER-CHD

From: PATHFINDER-CHD: prospective registry on adults with congenital heart disease, abnormal ventricular function, and/or heart failure as a foundation for establishing rehabilitative, prehabilitative, preventive, and health-promoting measures: rationale, aims, design and methods

 

Inclusion

Follow-up visits

Parameter

  

Demographic data

X

 

Type of congenital heart defect /anomaly

Congenital anomalies of the left heart

Congenital anomalies of the right heart

Septal and vascular defects

Complex cardiovascular defects

Coronary artery anomalies

Connective tissue disorders

Congenital metabolic disorders with cardiovascular involvement

Other inherited disorders with cardiovascular involvement

X

 

Comorbidities: Cardiac and Non-cardiac

X

X

Post operative / postinterventional status

Palliative cardiac surgery

Corrective/reparative cardiac surgery

Cardiac catheter intervention

Antiarrhythmic cardiac intervention

Follow-up: Re- and further Operations/-Interventions

X

X

Chronic heart failure (CHF)

Type

Number of decompensations

Clinical course

Signs and symptoms of decompensation

Functional class

ACC/AHA stages

X

X

Electrocardiogram

X

X

Echocardiography

Heart anatomy and function assessment

Assessment of cardiac valves

Assessment of great arteries

X

X

Magnetic Resonance Tomography

Heart anatomy and function assessment

Assessment of cardiac valves

Assessment of great arteries

X

X

Laboratory Assessments

X

X

Cardiac catheterization data

X

X

Cardio-pulmonary exercise test data

X

X

6-min walk distance data

X

X

Cardiovascular medication at entry and discharge

Heart failure-specific medication (1)

Antiarrhythmic medication

Anticoagulation

Pulmonary vascular/hypertension (PH)-targeted medication (2)

Additional medical treatment

  

Accompanying measures (3)

X

X

Complications during treatment

X

X

Listing for transplantation

X

X

Information on current hospitalization

X

X

  1. (1) Congestive Heart Failure (CHF) specific drug treatment includes beta blockers, ACE inhibitors, AT blockers (sartans), neprilysin-sacubitril, aliskiren, diuretics, aldosterone antagonists, sodium-glucose cotransporter 2 (SGLT2) inhibitors, soluble guanylyl cyclase (sGC) stimulators, digitalis glycosides, levosimendan, PDE III inhibitors, milrinone and calcium channel blockers
  2. (2) PH-targeted drugs included PDE-5-inhibitors, endothelin receptor antagonists, sGC stimulators, prostacyclins, sotatercept (after approval), oxygen-insufflation (O2) therapy
  3. (3) Accompanying measures include: physical therapy, cardiac devices including resynchronization therapy or ICD, lifestyle modification