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Attitudes of people living with cancer towards trial non-publication and research participation
  1. Daniel G Hamilton1,2,
  2. Sarah Everitt3,
  3. Matthew J Page4,
  4. Simine Vazire5,
  5. Fiona Fidler1,6
  1. 1 MetaMelb Research Group, School of BioSciences, The University of Melbourne, Melbourne, Victoria, Australia
  2. 2 Melbourne Medical School, Faculty of Medicine, Dentistry & Health Sciences, The University of Melbourne, Melbourne, Victoria, Australia
  3. 3 The Sir Peter MacCallum Department of Oncology, The University of Melbourne, Melbourne, Victoria, Australia
  4. 4 School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia
  5. 5 Melbourne School of Psychological Sciences, The University of Melbourne, Melbourne, Victoria, Australia
  6. 6 School of Historical and Philosophical Studies, The University of Melbourne, Parkville, Victoria, Australia
  1. Correspondence to Daniel G Hamilton, MetaMelb Research Group, School of BioSciences, The University of Melbourne, Melbourne, Victoria, Australia; hamilton.d{at}

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In medicine, the results of clinical trials are considered one of the most trustworthy forms of scientific evidence that can be generated. Consequently, the medical community relies on researchers running trials to publish timely summaries of their results to share new discoveries, identify areas for future research (as well as research ‘dead ends’) and ultimately to ensure patients receive the best and safest medical treatments available. However, previous research has shown that for approximately half of clinical trials, results are not reported in a timely manner or at all.1–4 For example, one of these studies reported that between 2006 and 2016, the results of over 11 000 completed clinical trials (enrolling 8.7 million patients) still had not been shared with doctors, researchers or patients.3

Non-publication of completed clinical trials has been identified as a major contributor to research waste.5 Addressing this problem and enhancing the transparency of clinical trial results are vital to progress research and provide the highest quality patient care. We asked Australians affected by cancer whether this form of research waste would impact their decision to participate in research in the future. Extensive information about the study’s methodology, including the survey design and recruitment strategy, is reported in another article.6 However, in short, the first paragraph was shown to participants following completion of a survey of cancer patients’ attitudes on research data sharing.6 Participants were then asked two questions concerning (1) the importance of …

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  • Contributors DGH conceived and designed the study, collected data, performed the formal analysis, curated the data and wrote and prepared the original draft. SE, SV, FF and MJP designed, supervised and validated the study. All authors contributed to the methodology, interpreted the results, contributed to writing the manuscript, approved the final version and had final responsibility for the decision to submit for publication. DGH is guarantor.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.