Frequently Asked Questions

1. What is WAGER?
2. Why the need for WAGER?
3. What are the benefits of WAGER?
4. Have similar projects been done before?
5. What is the Patient Register?
6. How are the WAGER research databases and Patient Registers administered?
7. Does a central repository of linked data exist?
8. Is any data collected about individuals?
9. Who manages the data?
10. Who has custody of the data?
11. How is data access regulated?
12. Who has access to the data?
13. How is the project governed?
14. How are privacy and confidentiality assured?

1. What is WAGER?

WAGER stands for Western Australian Genetic Epidemiology Resource. WAGER is funded by an NHMRC enabling grant in 2004 to develop enabling infrastructure to facilitate the integration of existing and future disease-specific clinical, epidemiological and genetic resources available in WA with biospecimen banks and with the core WA Data Linkage System. A further aim is to facilitate access to these resources and to provide support infrastructure for the conduct of ongoing and new research studies.

2. Why the need for WAGER?

The population health and clinical research resources in WA are internationally recognized but as yet underutilised for genetic epidemiology and genomics research. WAGER seeks to assist in expediting characterization of genetic and environmental factors modulating disease risk or the clinical course of disease over the life course of an individual, and to build the foundation for long-term programs of epidemiological and clinical investigation and intervention in Australia. Given the epidemiological strengths in WA, the creation of WAGER will ideally position Australian research groups to explore gene-environment interactions, an often-ignored area of genetic epidemiology but one that is likely to become critically important for many complex human diseases.

3. What are the benefits of WAGER?

The major challenges facing most developed nations are those related to the rising incidence of common, complex diseases in all age groups, but particularly the young and the aging, and the increasing complexity of their diagnosis, prevention, and treatment. Chronic diseases such asthma, diabetes, obesity, CVD, osteoporosis and schizophrenia are associated with significant long-term morbidity and mortality, and are major public health problems both in Australia and worldwide. They are also rising in incidence in many societies and are associated with substantial economic costs worldwide. We are now also seeing increases in costly disorders associated with lifestyle risk factors such as obesity (25% of Australian teenagers now obese, up from 10% 15 years ago). Identification of specific genes affecting susceptibility to such diseases is likely to allow fundamental insights into disease biology, and will in turn help to better define epidemiological risk factors.

WAGER will contribute to improved health outcomes by:

1. enabling and encouraging the study of complex interactions between genetic and environmental risks to enable the causal pathways to these disorders to be elucidated and the most effective preventive strategies to be developed;
2. evaluating the effects of new aspects of clinical and preventive care in the total population;
3. monitoring of disease incidence in relation to changes in environmental and other factors;
4. the use of genetic, family and epidemiological data to develop new technologies and treatments; and
5. providing data to guide decision making in health services (especially important given the current national debates about effective resource allocation).

One of the major outcomes of WAGER will be the facilitation of collaboration within and between various disciplines and fields of medical research on a scale unprecedented in Australia. The new high-end core informatics infrastructure and databases will lead to dramatic increases in the efficiency of resource utilization and a reduction in duplication of efforts by individual groups. Australian researchers will have the means to enquire which subjects with detailed clinical and epidemiological data, biospecimens and linkages to health information are available for the whole spectrum of human disease at a general population level. Pooling resources through collaboration will also lead to increased statistical power to detect modest environmental and genetic main effects and interactions. Significant new initiatives in teaching, collaboration, and data access opportunities relevant to gene discovery, clinical and genetic epidemiology, new therapies, preventive medicine, and pharmacogenomics will ensue at the national level.

4. Have similar projects been done before?

No other state in Australia and very few countries internationally have this capacity, which will be responsible for a large number of advances in our consideration of the causes and treatments of complex diseases.

5. What is the Patient Register?

The Patient Register (PR) will hold all demographic (identifying) information for all study participants. The PR will contain identifiable information (i.e. names, dates-of-birth, sex and addresses) of each subject in the contributing studies recorded in the meta-database. However, no clinical data will be recorded in this register. This register strictly contains personal demographic information. No online access will be available for the PR. No central repository of linked data will created as part of the facility.

Communication of information between the PR and the other WAGER databases will use coded person and study identifiers. The use of coded identifiers is to ensure that real identifiers used in the actual research studies are never revealed and the no staff at DLU can reconnect study ids back with actual human research data.

Linkages will be established within the PR (or between each list of individuals in contributing study datasets) to determine which subjects have been involved in which studies. The Patient Register will also be linked to the core datasets in the WA Data Linkage System.

6. How are the WAGER research databases and Patient Registers administered?

The WAGER research databases and Patient Register are maintained and administered at separate locations and by different bodies. The WAGER research databases are administered by the WAGER Informatics team at WA Institute for Medical Research whilst the Patient Register is maintained by Data Linkage Unit at Department of Health, WA.

7. Does a central repository of linked data exist?

No central repository of linked data has been created. Rather, the Patient Register creates linkage keys to enable the capacity for investigators to link their data to the information in the core WA datasets. Individual investigators need to obtain the necessary HREC approvals in order to link their data.

8. Is any data collected about individuals?

WAGER does not collect new health information about individuals. The research information available to WAGER comes from approved existing research projects with the necessary consent obtained from the respective data custodians.

9. Who manages the data?

The collection of disparate research and biospecimen datasets is managed by the WAGER Informatics team at the Western Australian Institute for Medical Research.

The Patient Register is managed by the Data Linkage Unit at the Department of Health of Western Australia.

10. Who has custody of the data?

The custodianship of the research data hosted on WAGER remains with the original data custodians.

11. How is data access regulated?

The Management and Scientific Advisory Committees are established to coordinate access to the biospecimens and epidemiological/research data, and to liaise with other peak access bodies such as the WA Data Linkage Management Committee. WAGER is a national resource, and will therefore be made available in a fair and reasonable manner to all bone fide Australian researchers with appropriate clearance from a properly constituted ethics committee and approval of the WAGER Scientific Advisory Committee.

12. Who has access to the data?

Access to any of the contributing datasets hosted on WAGER requires the approval of each of the data custodians involved. External users are required to enter into negotiations with individual custodians within WAGER for access. This involves defining authorship and cost recovery.

Application for access to the WAGER/DLU resources will follow those already established for the WA Data Linkage Project and WA Cross Jurisdictional Data Linkage Project. All applications will require specific ethics approval and if any sensitive or identifying details are to be included, a separate application to the Confidentiality of Health Information Committee (CHIC) will also be required.

13. How is the project governed?

A supervisory Management Committee and Scientific Advisory Committee for WAGER meet regularly to oversee the development of the facility, to liaise directly with other relevant bodies, to ensure that rigorous ethics, privacy and quality control measures are followed, and to manage requests for data access from the wider Australian research community.

14. How are privacy and confidentiality assured?

Privacy and confidentiality of data is enforced in various ways. Firstly, the WAGER databases made available to researchers do not contain any person-identifiable information. The WAGER research databases and Patient Register are stored, managed and administered separately by different organisations and in different locations. WAGER does not collect new health information about individuals.

Secondly, all WAGER staff sign Confidentiality Agreements before they work with any confidential information.

Thirdly, all research projects that wish to use WAGER must be submitted to and approved by one or more Western Australian ethics committee/s.

WAGER itself has been approved by and operates under the supervision of the ethics committees listed in the Your Privacy section on the website.

WAGER abides by the Privacy Act 1988 (Cth) and its National Privacy Principles.

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