Fontan: General health
| Year | 2009 – ongoing (but includes all individuals in Australia and New Zealand who have undergone the Fontan surgical procedure) | ||||
|---|---|---|---|---|---|
| Age | 18.1 (1.0 – 52.5) years | ||||
| Time point | Enrolment | Pre-surgery | Surgery | Follow-up visit(s) | Follow-up event(s) |
| Medical history | M | ||||
| Pregnancy illnesses/infections/interventions | M | M | |||
| Vital signs (including O2 saturation) |
M | M | |||
| Blood pressure (measured) | M | ||||
| General physical functioning (e.g. degree of limitations/symptoms in relation to any physical activity) |
M:NYHA | ||||
| Birth defects/congenital abnormalities | X | M | |||
| Comorbidities | M | M | |||
| Other (non-cardiac) surgical procedures |
M | M | |||
The Australian and New Zealand Fontan Registry has a number of cross-sectional or one-off studies currently underway or recently completed. Please see below for a brief list and description of a selection of studies. For more information about a particular study, please contact the Registry here[info@fontanregistry.com].
- Screening of Fontan patients in Australia and New Zealand for long-term liver and kidney damage (NHMRC funded) (2013-2015) (N = 152)
- Functional outcomes after Fontan surgery examining anti-coagulation and fenestration in relation to bone density, cardiac, exercise and neurologic outcomes (NHMRC-funded) (2014-2017)
- Neurocognitive outcomes in children and adults with a Fontan circulation (HeartKids funded) (2016-2017)
- Transition from paediatric to adult care for individuals with a Fontan circulation (NHMRC funded) (2014-2019)
- From the Heart study examining wellbeing and quality of life in individuals with a Fontan circulation and their families (NHMRC funded) (2014-2019)
- Pregnancy outcomes in women with a Fontan circulation (ongoing)
Featured measurements
NYHA: New York Heart Association (NYHA) Functional ClassificationLegend
| A | = Administration report abstraction |
| C | = Index child report (reporting on others) |
| L | = Linkage (to other databases) |
| M | = Medical records data abstraction |
| O | = Observation/direct assessment |
| N | = Nurse report |
| P | = Parent/primary caregiver report |
| Pe | = Peer report |
| S | = Self report |
| T | = Teacher report |
| X | = Undefined |
| X BF | = Pertaining to biological father |
| X BM | = Pertaining to biological mother |
| X C | = Pertaining to index child |
| X F | = Pertaining to father |
| X Fam | = Pertaining to family |
| X G | = Pertaining to grandparent(s) |
| X M | = Pertaining to mother |
| X P | = Pertaining to parent(s) |
| X Pa | = Pertaining to partner |
| X Pe | = Pertaining to peers |
| X Pr | = Pertaining to primary caregiver |
| X Si | = Pertaining to sibling(s) |