Data Registry
Cystic Fibrosis in Australia 2008 (PDF)
Cystic Fibrosis in Australia 2007 (PDF)
BACKGROUND
In 1996 Cystic Fibrosis Australia decided to set up a National Data Registry. Over the next 2 years all aspects of developing the data registry (DR) were explored until a final model was released in 1998.
We thank both Roche Products and Solvay Pharmaceuticals for the financial assistance they gave to set up the DR and to maintain ongoing funding.
We further thank the clinical staffs that do most of the work in keeping the DR up to date - this is not an easy job, but it has 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 Cystic Fibrosis on an Australian basis.
WHY SHOULD WE HAVE 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.
It is hoped that 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, but 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 organizations for their generous financial support over a number of years
- Solvay Pharmaceuticals
- Roche Products
- Thyne Reid Charitable Trust
- The Sylvia and Charles Viertel Foundation
- The Paul Newman Foundation
- AstraZeneca
- GlaxoSmithKline (GSK)
- The participants in the Cystic Fibrosis “The Great Escape Car Rally”
- 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:
Mr. Terry Stewart, CEO Cystic Fibrosis Australia (Chair)Assoc. Prof Scott Bell, The Prince Charles Hospital, Brisbane QLD
Assoc. 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
Assoc. Prof James Martin, Women's and Children's Hospital, Adelaide SA
Dr Gerard Ryan, Sir Charles Gairdner Hospital, Perth WA
Assoc. Prof. Philip Robinson. Royal Children's Hospital, Melbourne. VIC
Mr. Geoff Sims, Statistician, Data Base Management and Reporting
Mrs. Zez Stankovic, National Data Registry Coordinator, CFA
