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Australian Cardiac Procedures Registry (ACPR)

PROJECT DETAILS  

Contact information

Name

Australian Cardiac Procedures Registry  

Acronym

ACPR

Site link

https://acpr.org.au/

Registry head

A/ Prof Chris Reid

Contact person

Angela Brennan/ Diem Dinh

Senior Research Fellow

Registry location

CCRE, Monash University, Melbourne

Phone number

03) 9903 0517 / 03) 9903 0572

Mailing Address

Monash University

Level 6, 99 Commercial Road

Melbourne, 3004, VIC

Email address

angela.brennan@monash.edu.au / diem.dinh@monash.edu.au

 

GENERAL ASPECTS 

Date last updated

August 2010

Background information

 

Reference population

What is the common circumstance that determines inclusion in the registry

All patients who undergo a cardiac surgery, RCI or device procedure at participating hospitals.

Does the registry trace individuals through more than one episode of care?

Registry does not trace individuals through more than one episode of care.

What geographical area is covered by the registry

Australia; NSW, VIC, QLF, SA.

Expansion into other states of Australia is planned, and possibly in New Zealand.

 

TIME PERIOD COVERED BY THE REGISTRY 

Date in which data was first collected

Pilot – commenced 1st July 2009.

End date (if project no longer collects data)

30th November 2009. A number of sites are still collecting data. The aim is for data collection to be ongoing once funding has been obtained.

Does the registry collect continuous or periodic data?

We collect continuous data.

If the registry documents management of patients, for what periods of time are individuals followed up?

 30 day follow up undertaken during the pilot. 12 month follow up is planned.

What database/s, if any, are used to assist with follow up?

There are plans to link with the National Death Index (NDI) and date based admitted episodes data sets.

 

 

DATA SET

 

Content

 

Number of individuals/ episodes of care included in the registry

2059 Individuals 

Date in which this was determined

23/07/2010

Example of data collection questionnaire

https://acpr.org.au/

Data dictionary

https://acpr.org.au/downloads/ACPROperationsmanual.pdf

Data linkage

 

If nationally approved codes are used to identify the subject, clinician or institution, what is link key?

Medicare number

To which other database is linkage routinely undertaken

Links to the NDI are planned once the registry is funded and fully operational

Security

 

Where are the electronic data held?

Computer networked to and internal network: Data help on computer which is networked within the institution and backed up onto a server.

What happens to the paper forms?

Paper questionnaire or forms are destroyed, or paper records are not kept as all data are collected electronically

Confidentiality

 

How are records stored on the database?

Reversibility anonymised

Have subjects given consent for data collection?

Signed consent not obtained but option to opt out

What is the level to which subjects have consented?

Subjects informed individually of data collection and use to which data will be put 

 

OUTPUTS

Analysis

 

How frequently are data transferred from the health care providers to the central database?

Weekly (Once the web system if fully operational. It is expected that the sites will enter data on a daily/weekly basis)

Can ad hoc analyses be preformed for health care providers?

Locally: Yes (planned feature)

Centrally: Yes (planned feature)

Audit reports

 

How frequently are multi-centre audit reports produced?

No reports have been produced.

How frequently are provider-specific audit reports produced?

Audits are planned and will be carried out annually

Publications

No publications to date

 

MANAGEMENT 

 

Is the registry approved by any clinical/professional association?

No. Discussions have taken place with CSANZ regarding endorsement of ACPR.

Who is involved in the management database?

Doctors, Nurses, Epidemiologist, Statistician, IT specialist

Governance

 

Does a Steering Committee overseas the Registry?

Yes

Does a Management Committee overseas the day-to-day activities of the Registry?

Yes

Do terms of reference exist for the Steering Committee?

 Yes

There is a clearly documented pathway for escalating issues identified by the registry?

Yes. This is a planned feature. See attached draft peer review process.

How often does the Steering Committee meet?

Bi Monthly (planned)

How often does the Management Committee meet?

Monthly (planned)

Funding

 

What is the source of funding for the registry?

No explicit funds. A range of funding models are currently being explored including public and private sector funding.

 

 

DATA QUALITY

 

Coverage

 

Extent to which the eligible population is representative of the country

Level 4: Total population of country included.

Who is represented in the registry?

States: NSW, VIC, SA, and QLD participated in the pilot

Which group/s, if any, should be represented but is/are not?

 

Completeness of recruitment of eligible population

The proportion of the eligible population that the registry includes

All hospitals performing cardiac procedures in Australia.

How and when was completeness last determined?

Unknown at this point as no checking/audit of the pilot data has been undertaken. Planned to be checked via linkage with admitted episodes data sets.

Date in which last preformed

N/A

Variables

 

What variables are included in the registry

Identifier, Admin information, Condition, Intervention, Short term outcome, Major unknown confounders, Long term outcomes ( 12 month follow up is planned once the registry is funded and fully operational beyond the pilot.

Completeness of data

 

The percentage of variables at least 95% complete

Level 4: All or almost all (>97%)

When was the completeness last determined?

The web system has been built to only allow data to be submitted if a valid value is entered of notes support a null value. A formal analysis of the pilot has not been completed to data.

Continuous data

 

The percentage of continuous variables collected as rave data 

Level 4: All or almost all (>97%)

Use of explicit definitions for variables

The percentage of variables which have clear definitions laid out in a document such as a data manual

Level 4: All or almost all (>97%)

Use of explicit rules for deciding how variables are recorded

The percentage of variables which have clear rules on how to code them in the registry laid out in a document such as a data manual

Level 4: All or almost all (>97%)

Reliability of coding

How standardised is the coding for conditions and interventions? 

Level 1: Not tested. No intra-rater reliability test conducted.

How and when last tested

N/A

Independence of observations of primary outcomes

What outcome/s do/does the registries collect?

Primary outcome of interest collected by the registry: Mortality – see attached key performance indicators for each mortality process for the full list of KPI’s/ outcomes.

Is there any Bias associated with the outcome due to the way in which it was reported?

N/A No formal reports have been produced to date.

Data Validation

What measures are taken to ensure that the data are valid

Level 3: Range and consistency checks. Planned level 4: Range and consistency checks plus external validation using an alternative source.

Date this was determined

Not undertaken to date

 

 

CLASSIFICATION

 

Classification of registry

Cardiac surgery/ cardiology/cardiac intervention