The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project

Harriet J A Teare; Federico de Masi; Karina Banasik; Anna Barnett; Sanna Herrgard; Bernd Jablonka; Jacqueline W M Postma; Timothy J McDonald; Ian Forgie; Piotr J Chmura; Emil K Rydzka; Ramneek Gupta; Søren Brunak; Ewan Pearson; Jane Kaye

doi:10.1186/s40504-018-0083-0

The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project

Harriet J A Teare, Federico de Masi, Karina Banasik, Anna Barnett, Sanna Herrgard, Bernd Jablonka, Jacqueline W M Postma, Timothy J McDonald, Ian Forgie, Piotr J Chmura, Emil K Rydzka, Ramneek Gupta, Søren Brunak, Ewan Pearson, Jane Kaye

Disease Systems Biology Program

2 Citationer (Scopus)

62 Downloads (Pure)

Abstract

Biomedical research projects involving multiple partners from public and private sectors require coherent internal governance mechanisms to engender good working relationships. The DIRECT project is an example of such a venture, funded by the Innovative Medicines Initiative Joint Undertaking (IMI JU). This paper describes the data access policy that was developed within DIRECT to support data access and sharing, via the establishment of a 3-tiered Data Access Committee. The process was intended to allow quick access to data, whilst enabling strong oversight of how data were being accessed and by whom, and any subsequent analyses, to contribute to the overall objectives of the consortium.

Originalsprog	Engelsk
Artikelnummer	20
Tidsskrift	Life Sciences, Society and Policy
Vol/bind	14
Udgave nummer	1
Sider (fra-til)	1-17
ISSN	1746-5354
DOI	https://doi.org/10.1186/s40504-018-0083-0
Status	Udgivet - 4 sep. 2018

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10.1186/s40504-018-0083-0

The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) projectForlagets udgivne version, 1,16 MB

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Teare, H. J. A., de Masi, F., Banasik, K., Barnett, A., Herrgard, S., Jablonka, B., Postma, J. W. M., McDonald, T. J., Forgie, I., Chmura, P. J., Rydzka, E. K., Gupta, R., Brunak, S., Pearson, E., & Kaye, J. (2018). The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project. Life Sciences, Society and Policy, 14(1), 1-17. Artikel 20. https://doi.org/10.1186/s40504-018-0083-0

Teare, HJA, de Masi, F, Banasik, K, Barnett, A, Herrgard, S, Jablonka, B, Postma, JWM, McDonald, TJ, Forgie, I, Chmura, PJ, Rydzka, EK, Gupta, R, Brunak, S, Pearson, E & Kaye, J 2018, 'The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project', Life Sciences, Society and Policy, bind 14, nr. 1, 20, s. 1-17. https://doi.org/10.1186/s40504-018-0083-0

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AU - Jablonka, Bernd

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The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project

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