None listed
Conditions
Brief summary
With an increasing prevalence of people with CHD, combined with a lack of data to characterise the full spectrum of cases or long-term outcomes, there is a critical need to understand the burden of CHD in Australia and New Zealand. The development of a Regional Registry can generate the knowledge needed to better understand the true diversity of outcomes and burden of the entire spectrum of CHD across the lifespan. This information has the potential to drive policy development for the optimal management of both paediatric and adult populations to achieve better health outcomes. This Registry will aim to capture data on patients diagnosed with a congenital heart defect at any age and will be conducted in congenital heart units throughout Australia and New Zealand. It will collect data from medical records on epidemiology, CHD history, clinical course, symptoms and burden of disease from all participants who were born with a CHD. By participating in the Registry, hospitals will be able to provide patients with CHD an opportunity to contribute to the body of knowledge about the burden of CHD. This Regional CHD Registry will become a mandatory tool to provide best care to a growing population.
Interventions
There is no intervention. Congenital Heart Disease (CHD) incorporates a group of abnormalities of the heart at birth. Such abnormalities range from relatively simple defects to more complex conditions that incorporate multiple and major defects involving both the heart and the blood vessels connected to it. Retrospective data will be collected on all participants at the start of the study and then periodically for follow-up visits according to routine standard of care. There are no required clin
There is no intervention. Congenital Heart Disease (CHD) incorporates a group of abnormalities of the heart at birth. Such abnormalities range from relatively simple defects to more complex conditions that incorporate multiple and major defects involving both the heart and the blood vessels connected to it. Retrospective data will be collected on all participants at the start of the study and then periodically for follow-up visits according to routine standard of care. There are no required clinical procedures; the treating clinician will determine the assessments, laboratory tests, imaging procedures, and other evaluations to be performed for each participant as part of routine clinical care. All necessary information will be gathered from patient medical records as secondary source data retrospectively and then prospectively during ongoing patient follow-up in the Registry. Participants will remain active in the registry until they withdraw, become lost to follow up or deceased.
Sponsors
Congenital Heart Disease Alliance of Australia and New Zealand (CHAANZ)
Eligibility
Sex/Gender
All
Healthy volunteers
No
Inclusion criteria
1. Participants of any age, including children, infants and neonates. 2. Participant or parent (or legal guardian) is able to understand the consent and must be willing and able to give consent or assent (if applicable as determined by the Independent Ethics Committees) via the opt-out consent process. 3. Diagnosis of Congenital Heart Disease.
Exclusion criteria
1. Expressed wish not to participate. 2. Participant or patient’s parent/legal guardian unable to give consent.
Outcome results
None listed