Data Collection

Data Collection

Data is collected from all dialysis and transplant units in Australia and New Zealand at 31st December This encompasses all patient events that have occurred in the previous twelve months as well as a "snapshot" of all dialysis and transplants patients on those dates. This twelve month collection commenced from 31 December 2004. Prior to April 2004, data was collected twice a year at 31st March and 30th September.

A list of the participating units is available from the most recent ANZDATA Report Contents file. File is available for download from the Annual Report download area.

A preprinted form of previously recorded information for each patient is distributed for updating purposes.

Separate data forms for recording specific detail of paediatric patients or of those with cancer are distributed.

The ANZDATA data dictionary describes the structure of the database. This is updated whenever a revised data collection form is produced and also whenever coding changes or database modifications are made.

Electronic versions of some of the ANZDATA forms and Data Dictionary can be found at this link.

Data Validation

Upon receipt of the forms from each unit, the Registry checks the new information against the form returned from last survey for each patient.

New data is noted and checked for validity and any possible errors or uncertainties are listed and sent to the unit for correction.

Transplants operation details are cross checked with data from the Australia and New Zealand Organ Donation Registry and from Tissue Typing Centres in Australia and New Zealand.

There is no Registry initiated validation of most cases of primary renal disease, except diabetes. The Registry believe that in a country with a relatively small population, there is fairly uniform diagnostic criteria within the Nephrology community.

Patients who have transferred are followed by contacting the new caring unit and recording new events during that survey period.

Each unit is supplied with a list of their new patients for that survey period to ensure it is complete. Tissue Typing Centres provide a list of patients on the waiting list for a kidney transplant: Patients not already known to the Registry have their dialysis status clarified. These procedures help to ensure that patients are not missed. "Missing" patients are usually noted in the following survey period, as there has been no preprinted form received. Between 20 and 30 patients each six months are identified by their unit and reported in the following survey period.

Each living patient from the end of the previous survey is accounted for in the new survey period. Patients lost to follow up are coded as such.

Data Entry

Data entry is performed through customised screens using Oracle^® Forms running against an Oracle^® version 8i database. The feasibility of web enabled data entry is being considered in 2001.

Each unit is entered only when all data has been verified and complete. The data entry program has a large range of in-built validations concerning legal codes and range of values.

Later, at the completion of all data entry from every unit, special tables are created in the database to facilitate the final validations to ensure that dates are in correct sequence, that all transplant data is available and sequence numbers are correct.

When this criteria has been met, a computerised list of new events is compiled and checked against a manual list prepared by another person to ensure that no data has been omitted.

The Interim Summary is then produced and issued to each unit showing their patient numbers,transplants, deaths and mode of dialysis for that survey period.

Data Analysis

Data analyses are performed by the registry as part of our ongoing Annual Reports and Interim Summary. Analyses for others are considered once a formal request is made to the Registry. Guidelines for making requests of ANZDATA are available from this link.

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