Australian Cystic Fibrosis Data Registry (ACFDR)

In 1996 Cystic Fibrosis Australia decided to initiate a National CF Data Registry. Over the next 2 years all aspects of developing the data registry were explored until a working model was released in 1998. CFA thanks both Roche Products and at the time, Solvay Pharmaceuticals, now Abbott, for the financial assistance they provided to begin the data registry. We further thank the clinical staffers who do most of the work on data entry. It is a time consuming task with a rewarding outcome.

NATURE OF THE DATA REGISTRY

Using data from CF Centres in Australia the primary aim of the registry is to monitor disease progress in patients with Cystic Fibrosis in Australia.

WHY DO WE NEED AN AUSTRALIAN CF REGISTRY?

An accurate and adequately funded data registry is an essential information source for any group or organisation seeking to provide accurate information, education and research resources. In medicine, many such data registries have been established and registries have been established for many years in the United States of America, Canada, United Kingdom and more recently the European Community. In Australia, similar medical data registries include the Perinatal Data Registry, the Twin Registry and the Cancer Registry. Information coming from the registry will identify areas where the health of CF patients may be improved by the appropriate allocation of health resources. It will also provide a major resource tool for CF researchers in Australia. Only a region-wide (Australia) can provide these benefits to people with CF, their families and CF health care professionals and researchers.

HOW THE REGISTRY WILL WORK

The Australian Cystic Fibrosis Data Registry will collect data annually from CF Centres on their patient's health status (eg. height, weight, lung function) and markers of quality of life (eg. days spent in hospital, year at school, employment). The information will be obtained from the hospital medical record. The registry will not contact patients or their families and all the records are kept strictly confidential. If you would like to inspect a blank data form containing all the questions asked, please let us know and we will provide it to you via your clinic.

SECURITY, CONFIDENTIALITY AND THE DATA REGISTRY

Australian Cystic Fibrosis Data Registry Information Management Policy and Practices 2005

The data is stored in the registry in what is known as a 'potentially identifiable' form. This means that a code is assigned to each patient (eg. 204COPE, 204MCKA) and that a single list of patient names and their assigned code is kept separately which could then be used to decode a patient's data entry if necessary. This is important so that if for example, a patient moves from a CF centre at a Children's Hospital to a CF centre at an Adult Hospital, or if a family relocate to another state, the patient's information can be re-accessed and their entry in the data registry transferred to their new centre. All the data submitted to the registry will have the patient's code but not their name attached to it and so the only place where the data can be re-identified is the CF clinic. A summary report of the data collected for the data registry may be submitted for publication and an annual report will be produced by Cystic Fibrosis Australia, individual participants will not be identifiable in such a report.

PLEASE HELP US HELP YOU - Make sure your clinic is entering your details.

FUNDING

Cystic Fibrosis Australia would like to acknowledge and thank the following organisations for their generous financial support over a number of years.

Abbott
Roche Products
Thyne Reid Charitable Trust
The Sylvia and Charles Viertel Foundation
The Paul Newman Foundation
Astra Zeneca
GlaxoSmithKline (GSK)
Phebra
Novartis
Pharmaxis
The participants in The Great Escape Car Rally; fundraiser for Cystic Fibrosis
LJ Hooker Cystic Fibrosis National Sponsor for Research.

NATIONAL DATA REGISTRY ADVISORY COMMITTEE

Thanks go to the following, which have shown a commitment to making the Data Registry a useful tool for improving health and standards in the community.

Members are:

Assoc/Prof Scott Bell, The Prince Charles Hospital, Brisbane QLD

Prof Peter Bye, Royal Price Alfred Hospital, Camperdown NSW

Dr Peter Cooper, The Children's Hospital, Westmead NSW

Assoc/Prof Adam Jaffe, The Sydney Children’s Hospital

Professor Guy Marks, The University of Sydney

Assoc/Prof James Martin, Women's and Children's Hospital, Adelaide SA

Dr Sarath Ranganathan, Royal Children's Hospital, Melbourne VIC

Dr Gerard Ryan, Sir Charles Gairdner Hospital, Perth WA

Assoc/Prof Philip Robinson. Royal Children's Hospital, Melbourne. VIC