Making data sharing the norm in medical research

BMJ, Journal Year: 2023, Volume and Issue: unknown, P. p1434 - p1434

Published: July 11, 2023

Language: Английский

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Longitudinal studies of child mental disorders in the general population: A systematic review of study characteristics

JCPP Advances, Journal Year: 2023, Volume and Issue: 3(3)

Published: Aug. 11, 2023

Longitudinal studies of child mental disorders in the general population (herein study) investigate trends prevalence, incidence, risk/protective factors, and sequelae for disorders. They are time resource intensive but offer life-course perspectives examination causal mechanisms. Comprehensive syntheses methods existing will provide an understanding conducted to date, inventory studies, inform planning new longitudinal studies.

Language: Английский

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What do Australians affected by cancer think about oncology researchers sharing research data: a cross-sectional survey

medRxiv (Cold Spring Harbor Laboratory), Journal Year: 2023, Volume and Issue: unknown

Published: May 2, 2023

Objectives To characterise the attitudes of Australians affected by cancer towards sharing de-identified research data with third parties, including public. Design, setting, participants Anonymous online survey between October 2022 and February 2023 adult previously diagnosed cancer. Main outcome measures Self-reported human non-human data, hypothetical their anonymised medical information responses to survey. Results 551 respondents contributed There was strong support for researchers doctors (90% 95% respectively) non-profit (both 94%). However, this declined when were asked whether should be shared for-profit 64%) or posted publicly 61%). When if they would hypothetically consent at treatment location collecting publicly, only half agreed (50%). In contrast, after being shown a visual representation 80% supported it publicly. A further 10% also public some most frequently desired withheld education history levels trust in healthcare stakeholders. Conclusions particularly clinician researchers. Visualisation may enhance making available. These results help alleviate any concerns about participants’ on sharing, as well boost researchers’ motivation sharing.

Language: Английский

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Responsibilities for receiving and using individual participant data

Cochrane Evidence Synthesis and Methods, Journal Year: 2023, Volume and Issue: 1(9)

Published: Nov. 1, 2023

Sharing of individual participant data enhances the value existing to generate new evidence and inform decision-making. While there is strong in-principle support for sharing, in practice study are often difficult find, access, re-use. Currently, no consensus statement guide data-sharing process. In particular, more guidance needed on responsibilities recipients re-using data. To determine views data, propose how these could be met. A 2-h online focus group was conducted at 2021 Association Interdisciplinary Meta-research Open Science conference. Three example scenarios were discussed (evidence synthesis, reproducibility, secondary analyses). Notes audio transcripts collated using thematic analysis shared with attendees further iterative input. purposive sample 16 conference delegates attended group. Analyses revealed four recurring themes that synthesized into recommendations. The "privacy ethics" theme described need prioritize protection privacy, recommendation proactively share a secure management plan ethical oversight provider. "capability resourcing" required demonstrate sufficient capacity process analyze "recognition collaboration" asserted responsibility acknowledge contributions providers invite them contribute project. Last, "compliance" focused adhere local sharing regulations. Successful re-use requires cooperation from multiple stakeholders. We identified whom arose research team who collected Implementation facilitate increased sharing.

Language: Английский

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Evaluating the Reproducibility and Verifiability of Nutrition Research: A Case Study of Studies Assessing the Relationship Between Potatoes and Colorectal Cancer

medRxiv (Cold Spring Harbor Laboratory), Journal Year: 2024, Volume and Issue: unknown

Published: Dec. 2, 2024

The credibility of nutritional research is dependent on the rigor with which studies are conducted and ability for independent assessment to be performed. Despite importance these, more work needed in field nutrition buttress trustworthiness research.

Language: Английский

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