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Data Access

Data Access Policy

PURPOSE AND SCOPE 

Access to data collected and collated by the Australian and New Zealand Hip Fracture Registry (ANZHFR) is guided by protocols and procedures to maintain privacy and confidentiality. Provision of data to the registry is subject to the study protocol, which has been approved by Human Research Ethics Committees in each jurisdiction, and the relevant Research Governance Offices of participating hospitals. This document provides guidance to the ANZHFR’s approach to dealing with requests to access registry data, and outlines the procedures for applicants to follow when making a request for access to data. 

 

BACKGROUND 

The ANZHFR holds identified data relating to people 50 years of age and over admitted to hospital with a fractured proximal femur. The registry contains data submitted by participating hospitals, and it is important that the privacy of this information is maintained. This policy is intended to protect privacy and confidentiality when considering requests from third parties to access the data held in the registry. In considering requests to access and use ANZHFR data, the primary aim of the Steering Group is to protect the individual participant’s privacy.

 

APPLICANT RESPONSIBILITIES

  1. People accessing ANZHFR data are responsible for ensuring appropriate security for the storage of any material, confidential or otherwise, held in any format including on computing systems. 
  2. A date for data disposal must be included in any request for access to data. 
  3. In accessing de‐identified data, no attempt will be made to re‐identify individuals in the data provided by the ANZHFR. 
  4. For research proposals, ethics and governance approvals must be provided prior to the release of data. 
  5. For research proposals, a schedule for the reporting and dissemination of results must be included in the submitted project outline. 

Requesting Data Access: A Step by Step Guide

Below please find a step to step guide on how to apply for access to the ANZHFR data. To download a PDF version of these steps, click here.

ANZHFR Data Access Request Form

As outlined in the steps above, please email your completed ANZHFR Data Policy & Access Request Form to request data access.

ANZHFR Data Dictionary

The ANZHFR Data Dictionary lists all active variables used in the Registry as well as provides an explanation of what the variable represents.

ANZHFR Data Dictionary - Version 14 (Oct 2021)

ANZHFR Data Dictionary Summary of Changes (2022)

ANZHFR Data Variable Concordance Table

Please find below the ANZHFR Concordance Tables outlining changes to variables in previous years. This document includes variables that are no longer active or collected by the registry.

ANZHFR Concordance Table - Patient Level Audit - Version 1 (2021)

ANZHFR Concordance Table - Facility Level Audit - Version 1 (2021)