Description:

The aims of the ANZLTR are the collection , collation and reporting of data relating to activity and outcomes of liver transplantation in Australia and New Zealand. Data is collected on all patients listed for liver transplantation in Australia and New Zealand

Additional information:

Have_(encrypted)_NHI No
Personally identifiable (e.g. linked to NHI numbers) and longitudinal or aggregated (e.g. for planning, clinical research etc.)? Patients are entered individually with no identifying data such as name or hospital numbers. A unique number generated by each unit identifies the patient to that unit eg Z0001
Volume of data (e.g. how many records) Since when? The ANZLTR currently contains data on 5,200 patients
Purpose and governance including ethics committee/patient consent mechanisms. Q: How do you get around ethics/privacy issues with your data sources? Esp. DHBs? Governance of the ANZLTR is by a Management Committee which includes the Heads of all the liver transplant units. All requests for information etc have to be approved by the Management Committee. Each of the liver transplant units includes in their consenting process a specific question referring to the use of the patients data for research purposes or submission to databases such as the ANZLTR. Data in the database is deidentified of any of the usual identifying variables.
Scope National
Does the data contain diagnoses and clinical outcomes? Does the data contain procedures, device information and medication for therapy? Does this data set have cost / price data? Data provided includes diagnoses of diseases causing liver failure and patient outcome with followup to death. Data is collected on the type of liver transplant [whole or reduced size graft] and donor source [cadaveric or living donor ]. No information on costings is collected.
Presence of Data dictionary? Column headings in Excel or any kind of data model if residing in a relational database (e.g. Access, SQL Server, Oracle etc.) The ANZLTR is a web based customised Oracle database with data dictionary
Linked (or linkable) to other datasets within your organisation or across the Sector There is currently no linkage to other databases
How often does this data set get updated? Daily? Weekly? Monthly? Quarterly? Yearly? Data is entered by the individual liver transplants unit in real time as patients are listed or events occur such as transplantation or death.
Indication of data quality (e.g. missing values, duplications, inconsistencies etc.). Q: Audits? How do you ensure the data is valid and correct? The data is downloaded once a year for analysis and reporting in the ANZLTR Report. The 24 th Report is about to be circulated. At that time rigorous crosschecking and data validation is carried out before analysis for the report is undertaken. Any discrepancies identified are corrected in the live database.
Brief info about the systems and processes used to collect/manage data. Q: Where the data is collected, in what form, and accessibility? The database is situated on a secure server. Data is entered as events occur directly into the database in real time by each liver transplant unit. Data administrators in each unit enter data. The database is available on a Read Only basis to all other staff in the liver transplant units
Data format, e.g., data structure, data types, and storage form (relational database, Excel, csv, etc.). ANZLTR is a relational database in Oracle with a query tool that allows export of all or selected data in Excel format.
How well the data is structured, e.g. free text VS coded text VS pick-list (drop-down list) Data fields are a mix of both drop-down menus and free text felds.
How quickly can the data be made available from time of request and how old is the data once it is made available An annual report of the ANZLTR is prepared in the early months of the year with data to 31st December of the previous year. The Report is widely circulated and available on the public web site of the ANZLTR. Specific requests for additional data are made available as soon as consent is given by the Management Committee and can be up to current data if requested.