FONTANorm study: recording the current care situation and establishing standardized nationwide follow-up recommendations for patients with univentricular palliation

FONTANorm study: recording the current care situation and establishing standardized nationwide follow-up recommendations for patients with univentricular palliation - FONTANorm

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00033560

Enrollment

1100

Registered

2024-07-01

Start date

2024-06-24

Completion date

Unknown

Last updated

2025-10-06

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Q20.4

Interventions

Group 1: An online survey of patients who have undergone Fontan surgery and the doctors who care for them will be used to determine the current status of aftercare following Fontan surgery throughout

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: pediatric cardiologists at university hospitals, pediatric clinics and pediatric cardiology practices in Germany who care for Fontan patients. Fontan patient parents and Fontan patients = 16 years of age who live in Germany.

Exclusion criteria

Exclusion criteria: none if inclusion criteria are met

Design outcomes

Primary

Measure	Time frame
- Generally (not patient-specific) recommended and utilized follow-up examinations for Fontan patients - Recommended and utilized drug therapy (anticongestive medication, anticoagulation, vitamin supplements, etc.) - Recommended and actual patient behavior in everyday life (school/work, sports, travel, nutrition, occupation, prevention, risk behavior, etc.)	—

Secondary

Measure	Time frame
- Differences between follow-up and prevention strategies recommended by doctors and implemented by patients - Identification of any existing gaps in care	—

Countries

Germany

Contacts

Public ContactAnja Tengler

LMU Klinikum Großhadern

anja.tengler@med.uni-muenchen.de+4989440073941

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026