Publications

This page records a list of publications we are aware of describing DataSHIELD development or application for analysis with the impact of the DataSHIELD project based on the total citations of these papers in google scholar.

Application to real data

Bonofiglio, F, Schumacher, M, Binder, H. Recovery of original individual person data (IPD) inferences from empirical IPD summaries only: Applications to distributed computing under disclosure constraints. Statistics in Medicine. 2020; 39: 11831198. https://doi.org/10.1002/sim.8470

Oluwagbemigun, K., Foerster, J., Watkins, C., Fouhy, F., Stanton, C., Bergmann, M. M., Boeing, H and Nöthlings, U. (2019). Dietary Patterns Are Associated with Serum Metabolite Patterns and Their Association Is Influenced by Gut Bacteria among Older German AdultsThe Journal of Nutrition, , nxz194, doi:10.1093/jn/nxz194

Gruendner, J., Schwachhofer, T, Sippl, P, Wolf, N, Erpenbeck, M, Gulden, C, Kapsner, L. A, Zierk, J, Mate, S, Sturzl, M, Croner, R, Prokosch, H. U, Toddenroth, D. (2019) KETOS: Clinical decision support and machine learning as a service - A training and deployment platform based on Docker, OMOP-CDM, and FHIR Web Services. PLoS One, Volume 14, Issue 10, doi:10.1371/journal.pone. 0223010. 

Pastorino, S. , Bishop, T. , Crozier, S. R., Granström, C. , Kordas, K. , Küpers, L. K., O'Brien, E. , Polanska, K. , Sauder, K. A., Zafarmand, M. H., Wilson, B. , Agyemang, C. , Burton, P. R., Cooper, C. , Corpeleijn, E. , Dabelea, D. , Hanke, W. , Inskip, H. M., McAuliffe, F. , Olsen, S. F., Vrijkotte, T. G., Brage, S. , Kennedy, A. , O'Gorman, D. , Scherer, P. , Wijndaele, K. , Wareham, N. J., Desoye, G. and Ong, K. K. (2018). Associations between maternal physical activity in early and late pregnancy and offspring birth size: remote federated individual level meta‚Äźanalysis from eight cohort studies. BJOG: Int J Obstet Gy. doi:10.1111/1471-0528.15476.

Zöller, D.,Lenz, S., Binder H. (2018). Distributed multivariable modeling for signature development under data protecton constraints. Insitute of Medical Biometry and Statistics, Faculty of Medicine and Medical Center- University of Freiburg.

Beenackers, M.A., Doiron, D., Fortier, I. et al. MINDMAP: establishing an integrated database infrastructure for research in ageing, mental well-being, and the urban environment. BMC Public Health 18, 158 (2018). https://doi.org/10.1186/s12889-018-5031-7

Dany Doiron, Yannick Marcon, Isabel Fortier, Paul Burton, Vincent Ferretti, Software Application Profile: Opal and Mica: open-source software solutions for epidemiological data management, harmonization and disseminationInternational Journal of Epidemiology, Volume 46, Issue 5, October 2017, Pages 1372–1378, https://doi.org/10.1093/ije/dyx180.

Doiron, D., de Hoogh, K., Probst-Hensch, N., Mbatchou, S., Eeftens, M., Cai, Y.Schindler, C., Fortier, I.Hodgson, S., Gaye, A., Stolk, R. and Hansell, A. (2017). Residential Air Pollution and Associations with Wheeze and Shortness of Breath in Adults: A Combined Analysis of Cross-Sectional Data from Two Large European Cohorts, Environmental Health Perspectives 125:9 CID: 097025 https://doi.org/10.1289/EHP1353

Cai, Y., Hansell, A.L., Blangiardo, M., Burton, P.R., BioSHaRE, de Hoogh, K., Doiron, D., Fortier, I., Gulliver, J., Hveem, K., Mbatchou, S., Morley, D.W., Stolk, R.P., Zijlema, W.L., Elliott, P., Hodgson,S. (2017). Long-term exposure to road traffic noise, ambient air pollution, and cardiovascular risk factors in the HUNT and lifelines cohorts, European Heart Journal, Volume 38, Issue 29, Pages 2290–2296. doi: 10.1093/eurheartj/ehx263

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 approachEuropean 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 participantsEnvironmental 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 studiesBMC 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.

 

Informatics: proof of principle and formal implementation

Gruendner J, Prokosch HU, Schindler S, Lenz S and Binder H. (2019).  A Queue-Poll Extension and DataSHIELD: Standardised, Monitored, Indirect and Secure Access to Sensitive Data. Stud. Health Technol Inform. 2019;258:115-119. PubMed PMID:30942726. doi: 10.3233/978-1-61499-959-1-115

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, 16, p.21. DOI: 10.5334/dsj-2017-021

Biostatistics: proof of principle and formal implementation

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


Wallace, S.E. (2016). What Does Anonymization Mean? DataSHIELD and the Need for Consensus on Anonymization TerminologyBiopreservation and Biobanking 14:3224-230. DOI: 10.1089/bio.2015.0119

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.

 

DataSHIELD in a broader strategic context

Johan Sundström, Cecilia Björkelund, Vilmantas Giedraitis, Per-Olof Hansson, Marieann Högman, Christer Janson, Ilona Koupil, Margareta Kristenson, Ylva Trolle Lagerros, Jerzy Leppert, Lars Lind, Lauren Lissner, Ingegerd Johansson, Jonas F. Ludvigsson, Peter M. Nilsson, Håkan Olsson, Nancy L. Pedersen, Andreas Rosenblad, Annika Rosengren, Sven Sandin, Tomas Snäckerström, Magnus Stenbeck, Stefan Söderberg, Elisabete Weiderpass, Anders Wanhainen, Patrik Wennberg, Isabel Fortier, Susanne Heller, Maria Storgärds & Bodil Svennblad (2019) Rationale for a Swedish cohort consortium, Upsala Journal of Medical Sciences, 124:1, 21-28, DOI: 10.1080/03009734.2018.1556754

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.