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Indagine nazionale sulle malattie cardiache congenite

Il sondaggio è ora chiuso e i risultati sono stati pubblicati su Heart Lung Circulation. Per maggiori informazioni sui risultati di questo progetto segui il link.

Risultati

Accoglienza

Benvenuti nel sito web della Congenital Heart Alliance of Australia and New Zealand (CHAANZ).

CHAANZ è un consorzio di ricercatori sulle malattie cardiache congenite provenienti da Australia e Nuova Zelanda. Il loro scopo è facilitare la ricerca mirata nelle cardiopatie congenite, promuovere la necessità di maggiori risorse e assistere con servizi per tutte le persone con cardiopatie congenite.

In the News

The ANZ CHD Registry was recently featured on Channel 9 News. Professor David Celermajer AO, has led the development of the ANZ CHD Registry and Clarissa Pitisikas, Head of Donor Services at HRI and one of Professor Celermajer's patients, spoke to 9News Health Reporter Gabriela Rogers.

Studio australiano sugli esiti e sul peso delle cardiopatie congenite nel corso della vita

Nel luglio 2020, il finanziamento è stato assegnato a CHAANZ dal Medical Research Future Fund Grants for Congenital Heart Disease. Questo progetto mira a comprendere gli oneri e gli esiti delle cardiopatie congenite.

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Aotearoa New Zealand

The Paediatric and Congenital Cardiac Service based at Starship/Auckland City Hospitals is very pleased to contribute to the CHAANZ Registry collaboration and grateful for the support and endorsement of Heart Kids New Zealand for this project.

At this time, it is only possible to enrol and contribute data from patients from Aotearoa New Zealand who have received inpatient or outpatient care in Te Toka Tumai Auckland (Starship, Greenlane and Auckland Hospitals).

Patient Engagement Study Interviews and focus groups are underway to consult patients on how they feel about their care, key challenges they face, and suggestions for care plan improvements. The purpose of these discussions will be to understand the participants’ impressions of the proposed care plan for transition from paediatric to adult CHD care and ongoing CHD care.	ANZ Congenital Heart Disease Registry The National Congenital Heart Disease survey is the first step towards addressing current research questions and developing solutions to help all patients with congenital heart disease, irrespective of where they sit on the disease continuum.	Outcomes & Burdens for CHD In addition to providing increased resources for the development of the ANZ Congenital Heart Disease Registry, the MRFF funding will also allow CHAANZ to expand its research in to the burdens and outcomes of congenital heart disease. Recruitment is now complete.	National CHD Survey The National Congenital Heart Disease Online Survey was a voluntary online survey to help understand experiences and needs of people with congenital heart disease.
Developing the ANZ CHD Registry Developing and optimising the ANZ CHD Registry has been an involved process. Read about some of our published work here.	Our Research A call for a National Congenital Heart Disease Registry was advised after an extensive review of CHD management across Australia, published in the HeartKids Australia White paper.

Indagine nazionale sulle malattie cardiache congenite

Accoglienza

In the News

Studio australiano sugli esiti e sul peso delle cardiopatie congenite nel corso della vita

Aotearoa New Zealand

La nostra ricerca

Patient Engagement Study

ANZ Congenital Heart Disease Registry

The National Congenital Heart Disease survey is the first step towards addressing current research questions and developing solutions to help all patients with congenital heart disease, irrespective of where they sit on the disease continuum.

Outcomes & Burdens for CHD

In addition to providing increased resources for the development of the ANZ Congenital Heart Disease Registry, the MRFF funding will also allow CHAANZ to expand its research in to the burdens and outcomes of congenital heart disease. Recruitment is now complete.

National CHD Survey

The National Congenital Heart Disease Online Survey was a voluntary online survey to help understand experiences and needs of people with congenital heart disease.

Developing the ANZ CHD Registry

Developing and optimising the ANZ CHD Registry has been an involved process. Read about some of our published work here.

Our Research

A call for a National Congenital Heart Disease Registry was advised after an extensive review of CHD management across Australia, published in the HeartKids Australia White paper.