Progression of a National Cancer Clinical Trials Registry
At the Health Consumer Organisations’ Forum in September 2004, it became clear that the development of a National Cancer Clinical Trials Registry was a high priority for all parties involved. Whilst many in the cancer field have been working towards this goal for some time, through Roche’s discussions with health consumer organisations and clinicians, it was recognised that this important need was still some way from being met.
Roche therefore agreed to help facilitate the process by bringing together a group of key stakeholders for an initial meeting to discuss the issues involved in its development and maintenance.
Fifty-two representatives from health consumer organisations, patient advocacy groups, clinicians, academics, government and the pharmaceutical industry attended the meeting, which was convened by the Clinical Oncological Society of Australia (COSA), on February 23, 2005.
The meeting was chaired by Professor Steve Ackland, President, COSA, and was divided into morning and afternoon sessions.
The morning session focussed on providing up-to-date information on clinical trial registry developments in
The remainder of the meeting allowed delegates to discuss and consider the parameters and requirements of a National Cancer Clinical Trials Registry, and the expectations about what it should deliver for the cancer community.
The deliberations resulted in key recommendations covering several areas including:
- Consultation
- Likely user groups and their needs
- Data categories
- Data collection and updating processes for industry and non-industry studies
- Issue relating to the inclusion of early phase (phase 1) clinical trials
- Making the information available (access to data/support services)
- On-going management, sustainability and administration of the register
Following the meeting, Professor Ackland, on behalf of the meeting delegates, submitted these recommendations to Professor Alan Pettigrew, Chief Executive Officer, National Health and Medical Research Council (NHMRC) for the immediate consideration of the NHMRC at a meeting held on 9-10 March. A more detailed report from the National Clinical Trials Registry Meeting has also been prepared, and includes recommendations and information on specific operational aspects of the registry as related to cancer trials.
If you would like more information about any aspect of the National Cancer Clinical Trials Registry meeting, please Contact Us here.
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