Year 2009 – ongoing (but includes all individuals in Australia and New Zealand who have undergone the Fontan surgical procedure)
Age 19 (2.9-67.5)
Time point Enrolment Pre-surgery Surgery Follow-up visit(s) Follow-up event(s)
Doctor
(GP/ Cardiac Surgeon/
Cardiologist) information
M M
Participation in Fontan
research studies
X
Cardiac diagnosis
(cardiac morphology, cardiac
position, heterotaxy/ isomerism)
M
Non-cardiac diagnoses
(syndromes, non-cardiac
congenital abnormalities)
M
Prior cardiac procedure(s)
(including date and type of
procedure)
M
Imaging reports
(echo, cath, MRI)
M M M
Valvular regurgitation M M
Ventricular function M M
Site of Fontan procedure M
Fontan procedure data
(including admission, operation
and discharge dates, surgeon,
intra-operative mortality,
cardiopulmonary bypass
time (minutes), total aortic
cross clamp time (minutes),
operation report)
M
Fontan procedure type M
Concomitant procedures
at time of Fontan procedure
M
Post-operative complications M
Non-Fontan cardiac
procedure at time of Fontan
procedure admission
M
Site of follow-up visits(s) M
Date of follow-up visit(s) M
Thromboembolic event(s)
(e.g. stroke/TIA, pulmonary
embolism, clot in Fontan pathway)
M
Arrhythmic event(s) M
Use of cardioversion M
Bleeding event(s) M
Osteoporosis or osteoporotic
fracture event(s)
M
Protein losing enteropathy event(s) M
Plastic bronchitis event(s) M
Re-intervention event(s)
(e.g. Fontan revision or
conversion, fenestratation,
catheter ablation for arrhythmia,
AV valve repair or replacement)
M
Other symptoms
(e.g. cyanosis, liver
cirrhosis, clubbing)
M
Pacemaker status M M M M M
Cardiac transplant status M
Site of cardiac transplant procedure M
Fontan take-down status M
Site of Fontan take-down procedure M
Deceased status
(date, location and cause of death)
M M M M
Post mortem performed M M 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)

Legend

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
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)