Biostatistics and informatics: proof of principle and formal implementation

Wilson RC, Butters OW, Avraam D, Baker J, Tedds J, Turner A, Murtagh M and Burton P. (2017). DataSHIELD – new directions and dimensions. Data Science Journal.

Gaye A, Marcon Y, Isaeva J, LaFlamme P, Turner A, Jones EM, Minion J, Boyd AW, Newby CJ, Nuotio M-L, Wilson R, Butters O, Murtagh BP, Doiron D, Giepmans L, Wallace SE, Budin-Ljøsne I, Schmidt CO, Boffetta P, Boniol M, Bota M, Carter KW, deKlerk N, Dibben C, Francis RW, Hiekkalinna T, Hveem K, Kvaløy K, Millar S, Perry IJ, Peters A, Phillips CM, Popham F, Raab G, Reischl E, Sheehan N, Waldenberger M, Perola M, van den Heuvel E, Macleod J, Knoppers BM, Stolk RP, Fortier I, Harris JR, Woffenbuttel BHR, Murtagh MJ, Ferretti V, Burton PR. (2014). DataSHIELD: taking the analysis to the data, not the data to the analysis. International Journal of Epidemiology..

Jones EM, Sheehan NA, Gaye A, Laflamme P, Burton PR. (2013). Combined analysis of correlated data when data cannot be pooled. STAT 2:72-85.

Jones, EM, Sheehan, N, Masca, N, Wallace, S, Murtagh, MJ, Burton, PR.(2012). DataSHIELD – shared individual-level analysis without sharing data: a biostatistical perspective. Norwegian Journal of Epidemiology. 21 (2): 231-239.

Wolfson M, Wallace SE, Masca N, Rowe G, Sheehan NA, Ferretti V, Laflamme P, Tobin MD, Macleod J, Little J, Fortier I, Knoppers BM, Burton PR. (2010). DataSHIELD: resolving a conflict in contemporary bioscience–performing a pooled analysis of individual-level data without sharing the data. International Journal of Epidemiology, 39(5):1372-1382.

Social and ethico-legal issues

Budin-Ljøsne I, Burton PR, Isaeva J, Gaye A, Turner A, Murtagh MJ, Wallace S, Ferretti V, Harris JR. (2015). DataSHIELD: An Ethically Robust Solution to Multiple-Site Individual-Level Data Analysis. Public Health Genomics, 18:87-96.

Wallace SE, Gaye A, Shoush O, Burton PR. (2014). Protecting Personal Data in Epidemiological Research: DataSHIELD and UK Law. Public Health Genomics, 17:149-157.

Murtagh, MJ, Demir, I, Jenkings,N, Wallace, S, Murtagh, B, Boniol,, M, Bota, M, LaFlamme, P, Boffetta, P, Ferretti, V, Burton, PR. (2012). Securing the data economy: Translating privacy and enacting security in the development of DataSHIELD. Public Health Genomics, 15:243-253.

Application to real data

Cai, Y., Zijlema, W.L., Doiron, D., Blangiardo, M., Burton, P.R., Fortier, I., Gaye, A., Gulliver, J., de Hoogh, K., Hveem, K., Mbatchou, S., Morley, D.W., Stolk, R.P., Elliott, P., Hansell, A.L. and Hodgson, S. (2016). Ambient air pollution, traffic noise and adult asthma prevalence: a BioSHaRE approach. European Respiratory Journal ERJ-02127-2015. doi:10.1183/13993003.02127-2015

Zijlema, W., Cai, Y., Doiron, D., Mbatchou, S., Fortier, I., Gulliver, J., de Hoogh, K., Morley, D., Hodgson, S., Elliott, P., Key, T., Kongsgard, H., Hveem, K., Gaye, A., Burton, P., Hansell, A., Stolk, R. and Rosmalen, J. (2016). Road traffic noise, blood pressure and heart rate: Pooled analyses of harmonized data from 88,336 participants. Environmental Research 151, 804–813. doi:10.1016/j.envres.2016.09.014

van Vliet-Ostaptchouk JV, Nuotio ML, Slagter SN, Doiron D, Fischer K, Foco L, Gaye A, Gogele M, Heier M, Hiekkalinna T, Joensuu A, Newby C, Pang C, Partinen E, Reischl E, Schwienbacher C, Tammesoo ML, Swertz MA, Burton PR, Ferretti V, Fortier I, Giepmans L, Harris JR, Hillege HL, Holmen J, Jula A, Kootstra-Ros JE, Kvaloy K, Holmen TL, Mannisto S, Metspalu A, Midthjell K, Murtagh MJ, Peters A, Pramstaller PP, Saaristo T, Salomaa V, Stolk RP, Uusitupa M, van der Harst P, van der Klauw MM, Waldenberger M, Perola M, Wolffenbuttel BH. (2014). The prevalence of metabolic syndrome and metabolically healthy obesity in Europe: a collaborative analysis of ten large cohort studies. BMC endocrine disorders, 14:9.

Doiron D, Burton PR, Marcon Y, Gaye A, Wolffenbuttel BHR, Perola M, Stolk RP, Foco L, Minelli C, Waldenberger M, Holle R, Kvaløy K,Hillege HL, Tassé A-M, Ferretti V, Fortier I. (2013). Data harmonization and federated analysis of 3 population-based studies: the BioSHaRE project. Emerging Themes in Epidemiology, 10:12.

DataSHIELD in a broader strategic context

Butters OW, Issa S, Lusted J, Newbury M, Parsloe R, Holden N, Free RC, Beck T, Wilson RC, Burton PR and Tedds JA. (2016). The Biomedical Research Infrastructure Software as a Service Kit (BRISSKit): technical description [version 1; referees: 2 approved with reservations]. F1000Research (5):1905 (doi: 10.12688/f1000research.8736.1)

Murtagh MJ, Turner A, Minion JT, Fay M, Burton PR. (2016). International Data Sharing in Practice: New Technologies Meet Old Governance Biopreservation and Biobanking. 14(3): 231-240.

Dove ES, Joly Y, Tasse AM, Knoppers BM. (2015). Genomic cloud computing: legal and ethical points to consider. Eur J Hum Genet. 23:1271-8.

Burton PR, Murtagh MJ, Boyd A, Williams JB, Dove ES, Wallace SE, Tassé A-M, Little J, Chisholm RL, Gaye A. (2015). Data Safe Havens in health research and healthcare. Bioinformatics. 31 (20):3241-3248

Demir I and Murtagh MJ (2013) Data sharing across biobanks: epistemic values, data mutability and data incommensurability. New Genetics and Society, 32:350-365.

Murtagh, MJ, Thorrison, G, Kaye, J, Fortier, I, Harris, JR, Cox, D, Deschênes, M, Laflamme, P, Ferretti, V, Sheehan, N, Hudson, T. Cambon Thomsen, A, Stolk, R, Knoppers, BM, Brookes, AJ. Burton, PR. (2012). Navigating the perfect [data] storm. Norwegian Journal of Epidemiology, 21(2):203-209

Harris JR, Burton PR, Knoppers BM, Lindpaintner K, Bledsoe M, Brookes AJ, Budin-Ljosne I, Chisholm R, Cox D, Deschenes M, Fortier I, Hainaut P, Hewitt R, Kaye J, Litton JE, Metspalu A, Ollier B, Palmer LJ, Palotie A, Pasterk M, Perola M, Riegman PH, van Ommen GJ, Yuille M, Zatloukal K. (2012). Toward a roadmap in global biobanking for health. European Journal of Human Genetics, 20:1105-1111

Murtagh MJ, Demir I, Harris JR, Burton PR. (2011). Realizing the promise of population biobanks: a new model for translation. Human genetics, 130(3):333-45.