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Ethical and regulatory considerations in the use of individual participant data for studies of disease prediction

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  • Contributors BP co-conceived the project, designed the survey methods, collated and synthesised the results, and drafted the report. NR contributed to the development of the ideas and writing the study report. LAS co-conceived the project, reviewed the results and revised the report. The other members of the collaborative (see below) have shared their experiences, read and reviewed the paper and contributed to the discussion of ethical concepts underlying the report.

  • Collaborators The PICNICC collaboration is formed by those who have contributed data, or for patient/carer partners, significantly developed the project. The members are currently: authors, Roland A Ammann, Thomas Kuehne, Felix Niggli and David Nadal (Switzerland), Ian Hann (Ireland), Lillian Sung, Robert Klaassen and Sarah Alexander (Canada), Thomas Lehrnbecher and Arne Simon (Germany), Karin Meidema and Wim JE Tissing (Netherlands), Alex J Sutton, Richard Riley, Julia Chisholm and Rachel Dommett (GB), Elio Castagnola (Italy), Pamela Silva and Juan Tordecilla (Chile), Maria Spassova (Bulgaria), Hana Hakim and Glen Stryjewski (US), Gulsun Tezcan (Turkey), Lidija Kitanovski (Slovenia), Tiene Bauters and Geneviève Laureys (Belgium), Marianne Paesmann and J Peter Donnelly (EORTC).

  • Funding Grant number is MRC Research Training Fellowship G0800472.

  • Competing interests None.

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

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