Adding value to clinical trial registries: insights from Australian Cancer Trials Online, a website for consumers

Rachel Dear, Alexandra Barratt, Lisa Askie, Kevin McGeechan, Sheena Arora, Sally Crossing, David Currow, Martin Tattersall

    Research output: Contribution to journalArticle

    4 Citations (Scopus)

    Abstract

    Background Clinical trials registries are now operating in the USA, Europe, Australia, China, and India and more are planned. Trial registries could be an excellent source of information about clinical trials for patients and others affected by cancer as well as health care professionals, but may be difficult for patients to navigate and use. Purpose An opportunity arose in Australia to develop a consumer friendly cancer clinical trials website (Australian Cancer Trials Online (ACTO), www.australiancancertrials.gov.au) using an automated data feed from two large clinical trial registries. In this article, we describe aspects of this new website, and explore ways in which such a website may add value to clinical trial data which are already collected and held by trial registries. Methods The development of ACTO was completed by a Web company working in close association with staff at the Australian New Zealand Clinical Trials Registry (ANZCTR), and with consumer representatives. Data for the website were sourced directly and only from clinical trial registries, thus avoiding the creation of an additional trials database. It receives an automated, daily data feed of newly registered cancer clinical trials from both the ANZCTR and Clinical Trials.gov. Results The development of ACTO exemplifies the advantage of a local clinical trial registry working with consumers to provide accessible information about cancer clinical trials to meet consumers' information needs. We found that the inclusion of a lay summary added substantial value for consumers, and recommend that consideration be given to adding a lay summary to the mandatory data items collected by all trial registries. Furthermore, improved navigation, decision support tools, and consistency in data collection between clinical trial registries will also enable consumer websites to provide additional value for users. Limitations Clinical trial registration is not compulsory in Australia. If the additional cancer items (including a lay summary) are not provided by registrants of cancer trials on ANZCTR, this can compromise the quality and usefulness of the data for the end-user, in this case consumers, as they may encounter gaps in the data. Conclusion Expanding the World Health Organization Trial Registration Data Set to include this additional information, particularly the lay summary, would be valuable. A well-coordinated system of clinical trial registration is critical to the success of efforts to provide better access for all to inform about clinical trials.

    Original languageEnglish
    Pages (from-to)70-76
    Number of pages7
    JournalClinical Trials
    Volume8
    Issue number1
    DOIs
    Publication statusPublished - Feb 2011

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  • Cite this

    Dear, R., Barratt, A., Askie, L., McGeechan, K., Arora, S., Crossing, S., Currow, D., & Tattersall, M. (2011). Adding value to clinical trial registries: insights from Australian Cancer Trials Online, a website for consumers. Clinical Trials, 8(1), 70-76. https://doi.org/10.1177/1740774510392392