None listed
Conditions
Brief summary
The primary objective of the Australian and New Zealand Pulmonary Hypertension Patient Registry is to capture all prevalent and incident data on adult and paediatric patients with PH particularly PAH and CTEPH subgroups, presenting to centres of excellence to assist in future service planning, resource allocation and to promote equitable and timely access to life saving therapies and to audit standards of care across Australia and New Zealand. The secondary purpose of the PH registry is to formally characterise this patient population. The study aims to document the history of PH in addition to the current diagnostic and treatment trends in Australia and New Zealand Further, Australian data has previously shown a significant delay in the time to diagnosis. The ANZ Pulmonary Hypertension Patient Registry may serve as a tool to advocate for standardisation in access to skilled clinical care. Importantly it will allow pulmonary hypertension centres in Australia to compare their performance with national (aggregated) benchmarks.
Interventions
The registry will collect only secondary sourced data that is collected as part of routine clinical care in accordance with internationally published guidelines. As part of routine clinical care, all patients are expected to undergo a echocardiogram, six-minute walk test and if clinically indicated a right heart catheter on a six monthly basis in order to qualify for medication supplied by the Pharmaceutical Benefits Scheme as part of the Specialised Drugs Programme.
Data points that are att
The registry will collect only secondary sourced data that is collected as part of routine clinical care in accordance with internationally published guidelines. As part of routine clinical care, all patients are expected to undergo a echocardiogram, six-minute walk test and if clinically indicated a right heart catheter on a six monthly basis in order to qualify for medication supplied by the Pharmaceutical Benefits Scheme as part of the Specialised Drugs Programme. Data points that are attached to the registry include, mandatory evaluations specific to ongoing PBS medication approval and other diagnostic interventions necessary for the diagnosis and ongoing management of pulmonary hypertension. Registry data points: - Right Heart Catheterisation - Echocardiogram - 6 Minute Walk Test -Pulmonary Function Tests - Medications - Social History i.e. use of alcohol, tobacco, illicit drugs - Hospitalisations - CT chest scan -Ventilation/perfusion scan -Pulmonary Angiogram
Sponsors
Australian and New Zealand Pulmonary Hypertension Society Inc
Eligibility
Sex/Gender
All
Age
3 Months to No maximum
Healthy volunteers
No
Inclusion criteria
Patients will be eligible for entry into the registry if they meet the following criteria for Pulmonary Hypertension: 1. A current diagnosis of pulmonary hypertension and right heart catheter and echocardiogram performed at baseline demonstrating pulmonary hypertension (mPAP >20 mmg Hg 2. Exceptionally, patients may be enrolled with pulmonary hypertension diagnosed on ECHO, without invasive measurements, for example paediatric patients. Adult cases without invasive measurements will be discussed with the medical director of the Registry. 3. Prevalent cases may be enrolled retrospectively. Incident and prevalent cases will have ongoing prospective secondary sourced data collected on aspects of demographics, survival status and points relating to routine clinical care. No additional data will be collected that is not part of routine clinical care. Any missing data that is not collected as part of routine clinical practice will be left blank and coded as “not available”. The Registry will enrol patients aged 3 months and older at designated Paediatric centres where approval has been sought from Paediatric HREC. The Registry will enrol patients age 18 years or older at adult centres, and also mature minors at those sites in Australia and New Zealand where HREC approval is granted. Participants aged 16 years and over are eligible for enrolment in Adult centres in New Zealand
Exclusion criteria
All patients with a confirmed diagnosis of pulmonary hypertension are eligible to be enrolled in the PHSANZ Patient registry. Patients who are excluded from the registry will be those patients whose definitive diagnosis excludes them from having pulmonary hypertension
Outcome results
None listed