Optimising cohort data in Europe

U.S. Department of Health and Human Services. The Belmont Report. https://www.hhs. gov/ohrp/regulations-and-policy/belmont-report/index.html Vaccarino AL, Dharsee M, Strother S, Aldridge D, Arnott SR, Behan B, et al. Brain-CODE: A Secure Neuroinformatics Platform for Management, Federation, Sharing and Analysis of Multi-Dimensional Neuroscience Data. Frontiers in Neuroinformatics 2018 May 23;12:28. https://doi.org/10.3389/fninf.2018.00028 Vayena E, Blasimme A, Cohen IG. Machine learning in medicine: Addressing ethical challenges. PLoS Medicine 2018 Nov 6;15(11):e1002689. doi: 10.1371/journal. pmed.1002689. Van Der Wel KA, Östergren O, Lundberg O, Korhonen K, Martikainen P, Andersen AN, Urhoj SK. A gold mine, but still no Klondike: Nordic register data in health inequalities research. Scandinavian Journal of Public Health 2019 Aug;47(6):618-630. https://doi. org/10.1177/1403494819858046 van Veen EB. Observational health research in Europe: understanding the General Data Protection Regulation and underlying debate. European Journal of Cancer 2018;104:70-80. https://doi.org/10.1016/j.ejca.2018.09.032 Verhenneman G, Claes K, Derèze JJ, Herijgers P, Mathieu C, Rademakers FE, Reyda R, Vanautgaerden M. How GDPR Enhances Transparency and Fosters Pseudonymisation in Academic Medical Research. European Journal of Health Law 2020 Mar 4;27(1):35 57. https://doi.org/10.1163/15718093-12251009 Winter A, Stäubert S, Ammon D, Aiche S, Beyan O, Bischoff V, et al. Smart Medical Information Technology for Healthcare (SMITH). Methods of Information in Medicine 2018;57(S 01):e92-e105. https://doi/org/10.3414/ME18-02-0004 Wolfson M, Wallace SE, Masca N, Rowe G, Sheehan NA, Ferretti V, et al. DataSHIELD: resolving a conflict in contemporary bioscience--performing a pooled analysis of individual-level data without sharing the data. International Journal of Epidemiology 2010 Oct;39(5):1372-82. https://doi.org/10.1093%2Fije%2Fdyq111 Yuzbasioglu A, Kesikli B, Ozguç M. Biobanks as basis of individualizedmedicine: Challenges toward harmonization. Precision Medicine. London: Elsevier. 2018. 57-77. ZawatiMH, Tassé AM, Mendy M, Caboux E, Lang M. Barriers and Opportunities in Consent and Access Procedures in Low- and Middle-Income Country Biobanks: Meeting Notes from the BCNet Training and General Assembly. Biopreservation and Biobanking 2018 Jun;16(3):171-178. https://doi.org/10.1089/bio.2017.0081