Is rigorous retrospective harmonization possible? Application of the DataSHaPER approach across 53 large studies
Open accessAbstract
BACKGROUND: Proper understanding of the roles of, and interactions between genetic, lifestyle, environmental and psycho-social factors in determining the risk of development and/or progression of chronic diseases requires access to very large high-quality databases. Because of the financial, technical and time burdens related to developing and maintaining very large studies, the scientific community is increasingly synthesizing data from multiple studies to construct large databases. However, the data items collected by individual studies must be inferentially equivalent to be meaningfully synthesized. The DataSchema and Harmonization Platform for Epidemiological Research (DataSHaPER; http://www.datashaper.org) was developed to enable the rigorous assessment of the inferential equivalence, i.e. the potential for harmonization, of selected information from individual studies. METHODS: This article examines the value of using the DataSHaPER for retrospective harmonization of established studies. Using the DataSHaPER approach, the potential to generate 148 harmonized variables from the questionnaires and physical measures collected in 53 large population-based studies (6.9 million participants) was assessed. Variable and study characteristics that might influence the potential for data synthesis were also explored. RESULTS: Out of all assessment items evaluated (148 variables for each of the 53 studies), 38% could be harmonized. Certain characteristics of variables (i.e. relative importance, individual targeted, reference period) and of studies (i.e. observational units, data collection start date and mode of questionnaire administration) were associated with the potential for harmonization. For example, for variables deemed to be essential, 62% of assessment items paired could be harmonized. CONCLUSION: The current article shows that the DataSHaPER provides an effective and flexible approach for the retrospective harmonization of information across studies. To implement data synthesis, some additional scientific, ethico-legal and technical considerations must be addressed. The success of the DataSHaPER as a harmonization approach will depend on its continuing development and on the rigour and extent of its use. The DataSHaPER has the potential to take us closer to a truly collaborative epidemiology and offers the promise of enhanced research potential generated through synthesized databases.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Data are often not collected in a manner that allows them to be prospectively or retrospectively compared.
“However, data are often not collected in a manner that allows them to be prospectively or retrospectively compared.”
In a study attempting to retrospectively pool epidemiologic data from 53 large population-based studies of >10,000 individuals, part of the P3G collaborative network, 47% of the variables studied were impossible to match.
“For example, in a study attempting to retrospectively pool epidemiologic data from 53 large population-based studies of > 10,000 individuals, part of the P3G collaborative network (www.p3gobservatory.org), 47% of the variables studied were impossible to match (4).”
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
International physical activity questionnaire: 12-country reliability and validity
CRAIG, C. L., MARSHALL, A. L., SJ??STR??M, M., BAUMAN, A. E., BOOTH, M. L., AINSWORTH, B. E., PRATT, M., EKELUND, U., YNGVE, A., SALLIS, J. F., et al. (2003) · Medicine & Science in Sports & Exercise · doi:10.1249/01.mss.0000078924.61453.fb · Cited by 21,619 · see citing works
Longitudinal data analysis using generalized linear models
LIANG, K.-Y., & ZEGER, S. L. (1986) · Biometrika · doi:10.1093/biomet/73.1.13 · Cited by 18,550 · see citing works
An Experimental Application of the DELPHI Method to the Use of Experts
Dalkey, N., & Helmer, O. (1963) · Management Science · doi:10.1287/mnsc.9.3.458 · Cited by 6,061 · see citing works
Hindorff, L. A., Sethupathy, P., Junkins, H. A., Ramos, E. M., Mehta, J. P., Collins, F. S., & Manolio, T. A. (2009) · Proceedings of the National Academy of Sciences · doi:10.1073/pnas.0903103106 · Cited by 4,013 · see citing works
Gene–environment interactions in human diseases
Hunter, D. J. (2005) · Nature Reviews Genetics · doi:10.1038/nrg1578 · Cited by 1,132 · see citing works
Burton, P. R., Gurrin, L. C., & Sly, P. D. (1998) · Statistics in Medicine · doi:10.1002/(sici)1097-0258(19980615)17:11 · Cited by 629 · see citing works
The Canadian Longitudinal Study on Aging (CLSA)
Raina, P. S., Wolfson, C. M., Kirkland, S., Griffith, L. E., Oremus, M., Patterson, C., Tuokko, H. A., Penning, M. J., Balion, C. M., Hogan, D. B., et al. (2009) · Canadian Journal on Aging / La Revue canadienne du vieillissement · doi:10.1017/s0714980809990055 · Cited by 624 · see citing works
Spencer, C. C. A., Su, Z., Donnelly, P., & Marchini, J. (2009) · PLoS Genetics · doi:10.1371/journal.pgen.1000477 · Cited by 606 · see citing works
Stolk, R. P., Rosmalen, J. G. M., Postma, D. S., de Boer, R. A., Navis, G., Slaets, J. P. J., Ormel, J., & Wolffenbuttel, B. H. R. (2008) · European Journal of Epidemiology · doi:10.1007/s10654-007-9204-4 · Cited by 391 · see citing works
Self-citationStatistical Methods in Medical Research.
Armitage, P., & Berry, G. (1997) · Biometrics · doi:10.2307/2533132 · Cited by 260 · see citing works
Burton, P. R., Hansell, A., Fortier, I., Manolio, T. A., Khoury, M. J., Little, J., & Elliott, P. (2008) · International Journal of Epidemiology · doi:10.1093/ije/dyn147 · Cited by 258 · see citing works
Self-citationWong, M., Day, N., Luan, J., Chan, K., & Wareham, N. J. (2003) · International Journal of Epidemiology · doi:10.1093/ije/dyg002 · Cited by 237 · see citing works
Wolfson, M. C., Wallace, S. E., Masca, N. G. D., Rowe, G., Sheehan, N. A., Ferretti, V., Laflamme, P., Tobin, M. D., Macleod, J., Little, J., et al. (2010) · International Journal of Epidemiology · doi:10.1093/ije/dyq111 · Cited by 177 · see citing works
Self-citationFortier, I., Burton, P. R., Robson, P. J., Ferretti, V., Little, J., L’Heureux, F., Deschênes, M., Knoppers, B. M., Doiron, D., Keers, J. C., et al. (2010) · International Journal of Epidemiology · doi:10.1093/ije/dyq139 · Cited by 176 · see citing works
Self-citationLifeGene—a large prospective population-based study of global relevance
Almqvist, C., Adami, H., Franks, P. W., Groop, L., Ingelsson, E., Kere, J., Lissner, L., Litton, J., Maeurer, M. J., Michaëlsson, K., et al. (2010) · European Journal of Epidemiology · doi:10.1007/s10654-010-9521-x · Cited by 116 · see citing works
Borugian, M. J., Robson, P. J., Fortier, I., Parker, L., McLaughlin, J. R., Knoppers, B. M., Bedard, K., Gallagher, R. P., Sinclair, S., Ferretti, V., et al. (2010) · Canadian Medical Association Journal · doi:10.1503/cmaj.091540 · Cited by 73 · see citing works
Self-citationThinking big: large-scale collaborative research in observational epidemiology
Thompson, A. (2009) · European Journal of Epidemiology · doi:10.1007/s10654-009-9412-1 · Cited by 58 · see citing works
Using Behavioral Science Strategies for Defining the State-of-the-Art
Glaser, E. M. (1980) · The Journal of Applied Behavioral Science · doi:10.1177/002188638001600107 · Cited by 55 · see citing works
The standard error of Cohen's Kappa
Garner, J. B. (1991) · Statistics in Medicine · doi:10.1002/sim.4780100512 · Cited by 36 · see citing works
SAIL—a software system for sample and phenotype availability across biobanks and cohorts
Gostev, M., Fernandez-Banet, J., Rung, J., Dietrich, J., Prokopenko, I., Ripatti, S., McCarthy, M. I., Brāzma, A., & Krestyaninova, M. (2010) · Bioinformatics · doi:10.1093/bioinformatics/btq693 · Cited by 21 · see citing works
British Policy Formulation for the EU
Comstock, B. (2011) · Claremont-UC Undergraduate Research Conference on the European Union · doi:10.5642/urceu.201101.05 · Cited by 2 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Bally, M., Dendukuri, N., Rich, B., Nadeau, L., Helin‐Salmivaara, A., Garbe, E., & Brophy, J. M. (2017) · BMJ · doi:10.1136/bmj.j1909 · Cited by 535 · see citing works
DataSHIELD: taking the analysis to the data, not the data to the analysis
Gaye, A., Marcon, Y., Isaeva, J., Laflamme, P., Turner, A. J., Jones, E. M., Minion, J. T., Boyd, A. W., Newby, C., Nuotio, M.-L., et al. (2014) · International Journal of Epidemiology · doi:10.1093/ije/dyu188 · Cited by 307 · see citing works
Self-citationMaelstrom Research guidelines for rigorous retrospective data harmonization
Fortier, I., Raina, P. S., van den Heuvel, E. R., Griffith, L. E., Craig, C., Saliba, M., Doiron, D., Stolk, R. P., Knoppers, B. M., Ferretti, V., et al. (2016) · International Journal of Epidemiology · doi:10.1093/ije/dyw075 · Cited by 266 · see citing works
Self-citationVitonis, A. F., Vincent, K., Rahmioglu, N., Fassbender, A., Buck Louis, G. M., Hummelshoj, L., Giudice, L. C., Stratton, P., Adamson, G. D., Becker, C. M., et al. (2014) · Fertility and Sterility · doi:10.1016/j.fertnstert.2014.07.1244 · Cited by 236 · see citing works
“During Workshop I, four areas of standardization and harmonization were defined: [1] surgical phenotyping, [2] nonsurgical clinical/epidemiologic phenotyping, [3] and fluid sample and [4] tissue sample collection, processing, and storage protocols for molecular and genetic phenotyping.”
Awadalla, P., Boileau, C., Payette, Y., Idaghdour, Y., Goulet, J.-P., Knoppers, B. M., Hamet, P., & Laberge, C. M. (2012) · International Journal of Epidemiology · doi:10.1093/ije/dys160 · Cited by 227 · see citing works
Self-citationThe association of air pollution and depressed mood in 70,928 individuals from four European cohorts
Zijlema, W. L., Wolf, K., Emeny, R. T., Ladwig, K., Peters, A., Kongsgård, H. W., Hveem, K., Kvaløy, K., Yli‐Tuomi, T., Partonen, T., et al. (2015) · International Journal of Hygiene and Environmental Health · doi:10.1016/j.ijheh.2015.11.006 · Cited by 172 · see citing works
Self-citationToward a roadmap in global biobanking for health
Harris, J. R., Burton, P. R., Knoppers, B. M., Lindpaintner, K., Bledsoe, M. J., Brookes, A. J., Budin‐Ljøsne, I., Chisholm, R. L., Cox, D. R., Deschênes, M., et al. (2012) · European Journal of Human Genetics · doi:10.1038/ejhg.2012.96 · Cited by 168 · see citing works
Self-citationCharacterization of Gene–Environment Interactions for Colorectal Cancer Susceptibility Loci
Hutter, C. M., Chang-Claude, J. C., Slattery, M. L., Pflugeisen, B. M., Lin, Y., Duggan, D. J., Nan, H., Lemire, M., Rangrej, J., Figueiredo, J. C., et al. (2012) · Cancer Research · doi:10.1158/0008-5472.can-11-4067 · Cited by 160 · see citing works
Self-citationCai, Y. S., Hansell, A., Blangiardo, M., Burton, P. R., BioSHaRE, de Hoogh, K., Doiron, D., Fortier, I., Gulliver, J., Hveem, K., et al. (2017) · European Heart Journal · doi:10.1093/eurheartj/ehx263 · Cited by 160 · see citing works
Self-citationCai, Y. S., Hodgson, S., Blangiardo, M., Gulliver, J., Morley, D. W., Fecht, D., Vienneau, D., de Hoogh, K., Key, T. J., Hveem, K., et al. (2018) · Environment International · doi:10.1016/j.envint.2018.02.048 · Cited by 155 · see citing works
Data harmonization and federated analysis of population-based studies: the BioSHaRE project
Doiron, D., Burton, P. R., Marcon, Y., Gaye, A., Wolffenbuttel, B. H. R., Perola, M., Stolk, R. P., Foco, L., Minelli, C., Waldenberger, M., et al. (2013) · Emerging Themes in Epidemiology · doi:10.1186/1742-7622-10-12 · Cited by 146 · see citing works
Self-citationA General Primer for Data Harmonization
Cheng, C. I.-F., Messerschmidt, L., Bravo, I., Waldbauer, M., Bhavikatti, R., Schenk, C., Grujić, V., Model, T. A., Kubinec, R., & Barceló, J. (2024) · Scientific Data · doi:10.1038/s41597-024-02956-3 · Cited by 110 · see citing works
Invited Commentary: Consolidating Data Harmonization--How to Obtain Quality and Applicability?
Fortier, I., Doiron, D., Burton, P. R., & Raina, P. S. (2011) · American Journal of Epidemiology · doi:10.1093/aje/kwr194 · Cited by 88 · see citing works
Self-citationAmbient air pollution, traffic noise and adult asthma prevalence: a BioSHaRE approach
Cai, Y. S., Zijlema, W. L., Doiron, D., Blangiardo, M., Burton, P. R., Fortier, I., Gaye, A., Gulliver, J., de Hoogh, K., Hveem, K., et al. (2016) · European Respiratory Journal · doi:10.1183/13993003.02127-2015 · Cited by 80 · see citing works
Self-citationNiubo, A. S., Forero, C. G., Wu, Y., Giné-Vázquez, I., Prina, M. A., de la Fuente, J., Daskalopoulou, C., Critselis, E., de la Torre‐Luque, A., Panagiotakos, D. B., et al. (2020) · International Journal of Epidemiology · doi:10.1093/ije/dyaa236 · Cited by 79 · see citing works
Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework
Dove, E. S. (2015) · The Journal of Law Medicine & Ethics · doi:10.1111/jlme.12311 · Cited by 67 · see citing works
Data Harmonization and Data Pooling from Cohort Studies: A Practical Approach for Data Management
Adhikari, K., Patten, S. B., Patel, A. B., Premji, S., Tough, S., Letourneau, N. L., Giesbrecht, G. F., & Metcalfe, A. (2021) · International Journal for Population Data Science · doi:10.23889/ijpds.v6i1.1680 · Cited by 65 · see citing works
Toward Rigorous Data Harmonization in Cancer Epidemiology Research: One Approach
Rolland, B., Reid, S., Stelling, D. L., Warnick, G. S., Thornquist, M. D., Feng, Z., & Potter, J. D. (2015) · American Journal of Epidemiology · doi:10.1093/aje/kwv133 · Cited by 61 · see citing works
Rolland, B., & Lee, C. P. (2013) · ACM Conference on Computer Supported Cooperative Work (CSCW) · doi:10.1145/2441776.2441826 · Cited by 59 · see citing works
Butali, A., Little, J., Chevrier, C., Cordier, S., Steegers‐Theunissen, R. P. M., Jugessur, A., Oladugba, B., & Mossey, P. A. (2013) · Birth Defects Research Part A Clinical and Molecular Teratology · doi:10.1002/bdra.23133 · Cited by 58 · see citing works
Self-citationViPAR: a software platform for the Virtual Pooling and Analysis of Research Data.
Carter, K. W., Carter, K., Francis, R., Bresnahan, M., Gissler, M., Grønborg, T., Gross, R., Gunnes, N., Hammond, G., Hornig, M., et al. (2016) · International Journal of Epidemiology · doi:10.1093/ije/dyv193 · Cited by 51 · see citing works
Palumbo, P., Klenk, J., Cattelani, L., Bandinelli, S., Ferrucci, L., Rapp, K., Chiari, L., & Rothenbacher, D. (2016) · Journal of the American Medical Directors Association · doi:10.1016/j.jamda.2016.07.015 · Cited by 48 · see citing works
DataSHIELD – shared individual-level analysis without sharing the data: a biostatistical perspective
Jones, E. M., Sheehan, N. A., Masca, N. G. D., Wallace, S. E., Murtagh, M. J., & Burton, P. R. (2012) · Norsk Epidemiologi · doi:10.5324/nje.v21i2.1499 · Cited by 47 · see citing works
Self-citationEisenberg, M. E., Gower, A. L., Watson, R. J., Rider, G. N., Thomas, D., & Russell, S. T. (2022) · Journal of Adolescent Health · doi:10.1016/j.jadohealth.2022.04.007 · Cited by 42 · see citing works
Mc Dowell, C. P., Carlin, A., Capranica, L., Dillon, C., Harrington, J. M., Lakerveld, J., Loyen, A., Ling, F. C. M., Brug, J., MacDonncha, C., et al. (2018) · BMC Public Health · doi:10.1186/s12889-018-5702-4 · Cited by 41 · see citing works
Patti, M. A., Newschaffer, C. J., Eliot, M., Hamra, G. B., Chen, A., Croen, L., Fallin, M. D., Hertz‐Picciotto, I., Kalloo, G., Khoury, J. C., et al. (2021) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph18031254 · Cited by 41 · see citing works
Zijlema, W. L., Cai, Y. S., Doiron, D., Mbatchou, S., Fortier, I., Gulliver, J., de Hoogh, K., Morley, D. W., Hodgson, S., Elliott, P., et al. (2016) · Environmental Research · doi:10.1016/j.envres.2016.09.014 · Cited by 39 · see citing works
Self-citationCollaboration to Understand Complex Diseases
Roberts, J. M., Mascalzoni, D., Ness, R. B., & Poston, L. (2016) · Hypertension · doi:10.1161/hypertensionaha.115.06133 · Cited by 38 · see citing works
Spjuth, O., Krestyaninova, M., Hastings, J., Shen, H.-Y., Heikkinen, J., Waldenberger, M., Langhammer, A., Ladenvall, C., Esko, T., Persson, M.-Å., et al. (2015) · European Journal of Human Genetics · doi:10.1038/ejhg.2015.165 · Cited by 35 · see citing works
Self-citationGenetic Predictors of Circulating 25-Hydroxyvitamin D and Risk of Colorectal Cancer
Hiraki, L. T., Qu, C., Hutter, C. M., Baron, J. A., Berndt, S. I., Bezieau, S., Brenner, H., Caan, B. J., Casey, G., Chang-Claude, J. C., et al. (2013) · Cancer Epidemiology Biomarkers & Prevention · doi:10.1158/1055-9965.epi-13-0209 · Cited by 33 · see citing works
Self-citationPang, C., Hendriksen, D., Dijkstra, M., van der Velde, K. J., Kuiper, J., Hillege, H. L., & Swertz, M. A. (2014) · Journal of the American Medical Informatics Association · doi:10.1136/amiajnl-2013-002577 · Cited by 33 · see citing works
Sickle cell disease is a global prototype for integrative research and healthcare
Royal, C. D. M., Babyak, M. A., Shah, N., Srivatsa, S., Stewart, K. A., Tanabe, P. J., Wonkam, A., & Asnani, M. (2021) · Advanced Genetics · doi:10.1002/ggn2.10037 · Cited by 27 · see citing works
Establishing the value of genomics in medicine: the IGNITE Pragmatic Trials Network
Ginsburg, G. S., Cavallari, L. H., Chakraborty, H., Cooper‐DeHoff, R. M., Dexter, P. R., Eadon, M. T., Ferket, B. S., Horowitz, C. R., Johnson, J. A., Kannry, J. L., et al. (2021) · Genetics in Medicine · doi:10.1038/s41436-021-01118-9 · Cited by 32 · see citing works
Allen, J., Inder, K., Lewin, T. J., Attia, J., KAY‐LAMBKIN, F. J., Baker, A., Hazell, T., & Kelly, B. J. (2013) · BMC Medical Research Methodology · doi:10.1186/1471-2288-13-122 · Cited by 30 · see citing works
Adang, L. A., Sevagamoorthy, A., Sherbini, O., Fraser, J. L., Bonkowsky, J. L., Gavazzi, F., D'Aiello, R., Modesti, N. B., Yu, E. J., Mutua, S., et al. (2024) · Molecular Genetics and Metabolism · doi:10.1016/j.ymgme.2024.108453 · Cited by 28 · see citing works
Genetic variation associated with the occurrence and progression of neurological disorders
Little, J., Barakat, C., Martino, R., Pringsheim, T. M., Tremlett, H. L., McKay, K. A., Lieshout, P. H. H. M. V., Walsh, S. J., Gomes, J., & Krewski, D. R. (2016) · NeuroToxicology · doi:10.1016/j.neuro.2016.09.018 · Cited by 28 · see citing works
Self-citationInternational Data Sharing in Practice: New Technologies Meet Old Governance
Murtagh, M. J., Turner, A. J., Minion, J. T., Fay, M., & Burton, P. R. (2016) · Biopreservation and Biobanking · doi:10.1089/bio.2016.0002 · Cited by 27 · see citing works
Self-citationDoiron, D., Raina, P. S., Raina, P. S., L’Heureux, F., & Fortier, I. (2012) · Norsk Epidemiologi · doi:10.5324/nje.v21i2.1497 · Cited by 26 · see citing works
Self-citationGriffith, L. E., van den Heuvel, E. R., Raina, P. S., Fortier, I., Sohel, N., Hofer, S. M., Payette, H., Wolfson, C. M., Belleville, S., Kenny, M., et al. (2016) · American Journal of Epidemiology · doi:10.1093/aje/kww098 · Cited by 26 · see citing works
Self-citationMayen, M. S. A., Nisha, S. N., Afrin, S., Ahammed, T., Chowdhury, M. A. B., & Uddin, M. J. (2024) · BMC Medical Research Methodology · doi:10.1186/s12874-024-02400-5 · Cited by 25 · see citing works
Pezoulas, V. C., Goules, A. V., Kalatzis, F., Chatzis, L. G., Kourou, K. D., Venetsanopoulou, A. I., Exarchos, T. P., Gandolfo, S., Votis, K., Zampeli, E., et al. (2022) · Computational and Structural Biotechnology Journal · doi:10.1016/j.csbj.2022.01.002 · Cited by 25 · see citing works
Cohort Harmonization and Integrative Analysis From a Biomedical Engineering Perspective
Kourou, K. D., Pezoulas, V. C., Georga, E. I., Exarchos, T. P., Tsanakas, P. D., Tsiknakis, M., Varvarigou, T. A., Vita, S. D., Tzioufas, A. G., & Fotiadis, D. I. (2018) · IEEE Reviews in Biomedical Engineering · doi:10.1109/rbme.2018.2855055 · Cited by 25 · see citing works
Protecting Personal Data in Epidemiological Research: DataSHIELD and UK Law
Wallace, S. E., Gaye, A., Shoush, O., & Burton, P. R. (2014) · Public Health Genomics · doi:10.1159/000360255 · Cited by 24 · see citing works
Self-citationFortier, I., Dragieva, N., Saliba, M., Craig, C., & Robson, P. J. (2019) · CMAJ Open · doi:10.9778/cmajo.20180062 · Cited by 22 · see citing works
Self-citationDowell, C. P. M., Carlin, A., Capranica, L., Dillon, C. B., Harrington, J. M., Lakerveld, J., Loyen, A., Ling, F. C. M., Brug, J., MacDonncha, C., et al. (2020) · BMC Public Health · doi:10.1186/s12889-020-08481-3 · Cited by 21 · see citing works
Harmonization-Information Trade-Offs for Sharing Individual Participant Data in Biomedicine
Espin, A. T. (2022) · Harvard Data Science Review · doi:10.1162/99608f92.a9717b34 · Cited by 22 · see citing works
Benet, M., Albang, R., Pinart, M., Hohmann, C., Tischer, C. G., Annesi‐Maesano, I., Baïz, N., Bindslev‐Jensen, C., Carlsen, K. C. L., Carlsen, K., et al. (2018) · American Journal of Epidemiology · doi:10.1093/aje/kwy242 · Cited by 20 · see citing works
Pang, C., van Enckevort, D., de Haan, M., Kelpin, F. D. L., Jetten, J., Hendriksen, D., de Boer, T., Charbon, B., Winder, E., van der Velde, K. J., et al. (2016) · Bioinformatics · doi:10.1093/bioinformatics/btw155 · Cited by 18 · see citing works
Self-citationZhao, I. Y., Ho, M., Tyrovolas, S., Deng, S. Y., Montayre, J., & Molassiotis, A. (2023) · BMC Geriatrics · doi:10.1186/s12877-023-04019-5 · Cited by 17 · see citing works
State-of-the-Art and Future Challenges in the Integration of Biobank Catalogues
Müller, H., Reihs, R., Zatloukal, K., Jeanquartier, F., Merino-Martinez, R., van Enckevort, D., Swertz, M. A., & Holzinger, A. (2015) · Lecture notes in computer science · doi:10.1007/978-3-319-16226-3_11 · Cited by 17 · see citing works
Ridenour, T. A., Cruden, G., Yang, Y., Bonar, E. E., Rodriguez, A., Saavedra, L. M., Hussong, A. M., Walton, M. A., Deeds, B. G., Ford, J. L., et al. (2022) · Prevention Science · doi:10.1007/s11121-022-01412-1 · Cited by 17 · see citing works
New horizons in evidence-based care for older people: individual participant data meta-analysis
Clegg, A. P., Bandeen‐Roche, K., Farrin, A. J., Förster, A., Gill, T. M., Gladman, J. R. F., Kerse, N. M., Lindley, R. I., McManus, R. J., Melis, R. J. F., et al. (2022) · Age and Ageing · doi:10.1093/ageing/afac090 · Cited by 16 · see citing works
Patti, M. A., Li, N., Eliot, M., Newschaffer, C. J., Yolton, K. A., Khoury, J. C., Chen, A., Lanphear, B. P., Lyall, K., Hertz‐Picciotto, I., et al. (2021) · PLoS ONE · doi:10.1371/journal.pone.0245079 · Cited by 13 · see citing works
Costello, E. J., Eaves, L. J., Sullivan, P. F., Kennedy, M. A., Conway, K. P., Adkins, D. E., Angold, A. C., Clark, S. L., Erkanli, A., McClay, J. L., et al. (2013) · Twin Research and Human Genetics · doi:10.1017/thg.2013.6 · Cited by 13 · see citing works
Wysmułek, I., Tomescu‐Dubrow, I., & Kwak, J. (2021) · Quality & Quantity · doi:10.1007/s11135-021-01187-7 · Cited by 11 · see citing works
Gene–Environment Interaction in the Behavioral Sciences: Findings, Challenges, and Prospects
McGue, M. K., & Carey, B. E. (2017) · Springer eBooks · doi:10.1007/978-3-319-49227-8_3 · Cited by 11 · see citing works
A Stepwise Procedure to Define a Data Collection Framework for a Clinical Biobank
Manders, P., Peters, T. M. A., Siezen, A. E., van Rooij, I. A. L. M., Snijder, R., Swinkels, D. W., & Zielhuis, G. A. (2018) · Biopreservation and Biobanking · doi:10.1089/bio.2017.0084 · Cited by 11 · see citing works
P3G — 10years of toolbuilding: From the population biobank to the clinic
Ouellette, S., & Tassé, A. M. (2014) · Applied & Translational Genomics · doi:10.1016/j.atg.2014.04.004 · Cited by 10 · see citing works
Harmonization: a methodology for advancing research in multiple sclerosis
de Magalhaes, S. L. B., & Wolfson, C. M. (2012) · Acta Neurologica Scandinavica · doi:10.1111/ane.12031 · Cited by 10 · see citing works
Bamber, D., Collins, H. E., Powell, C., Gonçalves, G., Johnson, S. J., Manktelow, B. N., Ornelas, J. P., Lopes, J. C., Rocha, A., & Draper, E. S. (2022) · BMC Medical Research Methodology · doi:10.1186/s12874-021-01494-5 · Cited by 10 · see citing works
Tassé, A.-M. (2016) · Biopreservation and Biobanking · doi:10.1089/bio.2015.0121 · Cited by 9 · see citing works
Pioneering a multi-phase framework to harmonize self-reported sleep data across cohorts
Wallace, M. L., Redline, S. S., Oryshkewych, N., Hoepel, S. J. W., Luik, A. I., Stone, K. L., Kolko, R. P., Chung, J., Leng, Y., Robbins, R., et al. (2024) · SLEEP · doi:10.1093/sleep/zsae115 · Cited by 8 · see citing works
Pezoulas, V. C., & Fotiadis, D. I. (2024) · Connected Health And Telemedicine · doi:10.20517/chatmed.2023.37 · Cited by 8 · see citing works
Nel, S., Man, J. D., van den Berg, L., & Wenhold, F. A. M. (2024) · European Journal of Clinical Nutrition · doi:10.1038/s41430-024-01449-1 · Cited by 8 · see citing works
Kamali, P., van Bommel, A., Becherer, B. E., Cooter, R. D., Mureau, M. A. M., Pusic, A. L., Siesling, S., van der Hulst, R. R. W. J., Lin, S. J., & Rakhorst, H. A. (2019) · Plastic & Reconstructive Surgery · doi:10.1097/prs.0000000000006011 · Cited by 8 · see citing works
Vaccarino, A. L., Beaton, D., Black, S. E., Blier, P., Farzan, F., Finger, E. C., Foster, J. A., Freedman, M., Frey, B. N., Evans, S. G., et al. (2022) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2022.816465 · Cited by 8 · see citing works
dsSynthetic: synthetic data generation for the DataSHIELD federated analysis system
Banerjee, S., & Bishop, T. R. P. (2022) · BMC Research Notes · doi:10.1186/s13104-022-06111-2 · Cited by 8 · see citing works
Pezoulas, V. C., Exarchos, T. P., & Fotiadis, D. I. (2020) · Elsevier eBooks · doi:10.1016/b978-0-12-816507-2.00005-0 · Cited by 8 · see citing works
Centralizing environmental datasets to support (inter)national chronic disease research
Brook, J. R., Doiron, D., Setton, E. M., & Lakerveld, J. (2021) · Environmental Epidemiology · doi:10.1097/ee9.0000000000000129 · Cited by 6 · see citing works
Self-citationDiet, gut microbiome, and cognition in neurodegeneration: a review and methodological framework
Raber, J., & Sharpton, T. J. (2026) · Frontiers in Aging Neuroscience · doi:10.3389/fnagi.2026.1771904 · Cited by 5 · see citing works
Genomics: from persons to populations and back again
Knoppers, B. M. (2013) · Genome · doi:10.1139/gen-2013-0148 · Cited by 5 · see citing works
Self-citationMallya, P., Stevens, L. M., Zhao, J., Hong, C., Henao, R., Economou-Zavlanos, N., WOJDYLA, D. M., Schibler, T., Manchanda, V., Pencina, M. J., et al. (2023) · Circulation Cardiovascular Quality and Outcomes · doi:10.1161/circoutcomes.123.009938 · Cited by 5 · see citing works
Stingone, J. A., Bledsoe, H., Cooney, G., Diaz‐Insua, M., Faustman, E. M., Fecho, K., Gouripeddi, R., Holmes, P., Kaeli, D. R., Lozoya, O. A., et al. (2025) · Environmental Health Perspectives · doi:10.1021/ehp.6c00062 · Cited by 5 · see citing works
Automatic identification of variables in epidemiological datasets using logic regression
on behalf of the PROG-IMT study group, Lorenz, M., Abdi, N. A., Scheckenbach, F., Pflug, A., Bülbül, A., Catapano, A. L., Agewall, S., Владиславович, Е. М., Bots, M. L., et al. (2017) · BMC Medical Informatics and Decision Making · doi:10.1186/s12911-017-0429-1 · Cited by 5 · see citing works
Rationale for a Swedish cohort consortium
Sundström, J., Björkelund, C., Giedraitis, V., Hansson, P. O., Högman, M., Janson, C., Koupil, I., Kristenson, M., Lagerros, Y. T., Leppert, J., et al. (2019) · Upsala Journal of Medical Sciences · doi:10.1080/03009734.2018.1556754 · Cited by 5 · see citing works
Self-citationAn Algorithm for Creating Virtual Controls Using Integrated and Harmonized Longitudinal Data
Hansen, W. B., Chen, S., Saldana, S. J., & Ip, E. H. (2018) · Evaluation & the Health Professions · doi:10.1177/0163278718772882 · Cited by 5 · see citing works
Kiszkiel, Ł., Laskowski, P. P., Voas, D., Bacon, R. J., Wildman, W. J., Puga‐Gonzalez, I., Shults, F. L., & Talmont-Kamiński, K. (2024) · Religion Brain & Behavior · doi:10.1080/2153599x.2024.2305447 · Cited by 4 · see citing works
Jović, M., Haeri, M. A., Whitehouse, A., & van den Berg, S. M. (2024) · Frontiers in Psychology · doi:10.3389/fpsyg.2024.1345406 · Cited by 4 · see citing works
Zijlema, W. L., Cai, Y. S., Doiron, D., Mbatchou, S., Fortier, I., Gulliver, J., Morley, D. W., de Hoogh, K., Hodgson, S., Elliott, P., et al. (2016) · ISEE Conference Abstracts · doi:10.1289/isee.2016.4249 · Cited by 4 · see citing works
Self-citationSingh, A., Babyak, M. A., Brummett, B. H., Kraus, W. E., Siegler, I. C., Hauser, E. R., & Williams, R. B. (2018) · BMC Research Notes · doi:10.1186/s13104-018-3595-z · Cited by 3 · see citing works
Moore, K., Lazo, M., Ortigoza, A. F., Quistberg, D. A., Sánchez, B. N., Acharya, B., Alfaro, T., Kroker-Lobos, M. F., de Menezes, M. C., Sarmiento, O. L., et al. (2024) · International Journal of Epidemiology · doi:10.1093/ije/dyae171 · Cited by 2 · see citing works
Harmonization of SDQ and ASEBA Phenotypes: Measurement Variance Across Cohorts
Jović, M., Haeri, M. A., Rimfeld, K., Ensink, J. B. M., Lindauer, R., Vrijkotte, T. G. M., Whitehouse, A., & van den Berg, S. M. (2025) · Journal of Psychopathology and Behavioral Assessment · doi:10.1007/s10862-025-10204-0 · Cited by 2 · see citing works
Harmonized Phenotypes for Anxiety, Depression, and Attention-Deficit Hyperactivity Disorder (ADHD)
Jović, M., Agarwal, K., Whitehouse, A., & van den Berg, S. M. (2022) · Journal of Psychopathology and Behavioral Assessment · doi:10.1007/s10862-021-09925-9 · Cited by 2 · see citing works
Spjuth, O., Heikkinen, J., Litton, J., Palmgren, J., & Krestyaninova, M. (2014) · Lecture notes in computer science · doi:10.1007/978-3-319-08590-6_3 · Cited by 2 · see citing works
Software Application Profiles: useful and novel software for epidemiological data analysis
Forgetta, V., & Richards, J. B. (2016) · International Journal of Epidemiology · doi:10.1093/ije/dyw064 · Cited by 2 · see citing works
Measurement Issues in Synthesizing Survey-Item Responses
Becker, B. J., & Gözütok, A. S. (2022) · Emerging topics in statistics and biostatistics · doi:10.1007/978-3-031-14525-4_6 · Cited by 1 · see citing works
Székely, E., Laplante, D. P., Tiemeier, H. W., Evans, J., Pearson, R. M., Bekkhus, M., Bakermans‐Kranenburg, M. J., van IJzendoorn, M. H., & Wazana, A. D. (2023) · Frontiers in Child and Adolescent Psychiatry · doi:10.3389/frcha.2023.1206922 · Cited by 1 · see citing works
Sharma, V., O’Sullivan, M., Cassetti, O., Winning, L., O’Sullivan, A. M., & Crowe, M. (2024) · Journal of Public Health Dentistry · doi:10.1111/jphd.12632 · Cited by 1 · see citing works
Sadeghian, P. K. (2019) · doi:10.26481/dis.20190417pks · Cited by 1 · see citing works
dsSynthetic: Synthetic data generation for the DataSHIELD federated analysis systemPreprint
Banerjee, S., & Bishop, T. R. P. (2022) · doi:10.31219/osf.io/tkxqm · Cited by 1 · see citing works
A General Primer for Data HarmonizationPreprint
Cheng, C. I.-F., Messerschmidt, L., Bravo, I., Waldbauer, M., Bhavikatti, R., Schenk, C., Grujić, V., Model, T. A., Kubinec, R., & Barceló, J. (2023) · doi:10.31219/osf.io/baf2j · Cited by 1 · see citing works
Machón, M., Egüés, N., Martínez, N., van Kan, G. A., Calderón‐Larrañaga, A., Aldaz, P., Poblador‐Plou, B., Vrotsou, K., Clerencia-Sierra, M., Prados‐Torres, A., et al. (2015) · Revista Española de Geriatría y Gerontología · doi:10.1016/j.regg.2015.10.002
P3G: Towards an International Policy Platform for Population Genomics
Rahimzadeh, V. N., Tassé, A. M., Ouellette, S., Knoppers, B. M., & Fortier, I. (2017) · Springer eBooks · doi:10.1007/978-3-319-55120-3_9
Self-citationdsSynthetic: Synthetic data generation for the DataSHIELD federated analysis systemPreprint
Banerjee, S., & Bishop, T. R. P. (2022) · Research Square · doi:10.21203/rs.3.rs-1349760/v1
Pezoulas, V. C., Exarchos, T. P., & Fotiadis, D. I. (2020) · Elsevier eBooks · doi:10.1016/b978-0-12-816507-2.00008-6
A General Guide for Harmonizing Data: Drawing Lessons from Harmonizing COVID-19 PHSM DataPreprint
Cheng, C. I.-F., Messerschmidt, L., Bravo, I., Waldbauer, M., Bhavikatti, R., Schenk, C., Grujić, V., Model, T. A., Kubinec, R., & Barceló, J. (2023) · Research Square · doi:10.21203/rs.3.rs-2595267/v1
Harmonization for Cross‐National Secondary Analysis: Survey Data Recycling
Tomescu‐Dubrow, I., Słomczyński, K. M., Wysmułek, I., Powałko, P., Li, O., Tu, Y., Ślarzyński, M., Zieliński, M. W., & Lavryk, D. (2023) · doi:10.1002/9781119712206.ch9
Cardiovascular risk prediction in Central and Eastern Europe and former Soviet Union
Vikhireva, O. (2012) · UCL Discovery (University College London)
Bamber, D., Collins, H. E., Powell, C., Gonçalves, G., Johnson, S. J., Manktelow, B. N., Ornelas, J. P., Lopes, J. C., Rocha, A., & Draper, E. S. (2022) · Figshare · doi:10.6084/m9.figshare.18070786
McNaughton, E. P., Shen, K., Wang, J., Roenningen, A. E., Wiesman, A. I., Flores-Alonso, S. I., Bhatti, P., McIntosh, A. R., & Kent, B. A. (2026) · Neurobiology of Aging · doi:10.1016/j.neurobiolaging.2026.02.001
- Authors
- Fortier, I., Doiron, D., Little, J., Ferretti, V., L’Heureux, F., Stolk, R. P., Knoppers, B. M., Hudson, T. J., & Burton, P. R.
- Affiliations
- McGill University Health Centre (CA)
- Ontario Institute for Cancer Research (CA)
- Corresponding author
- Fortier, Isabel
- ORCID
- Venue
- International Journal of Epidemiology
- Publisher
- Oxford University Press (OUP)
- Published
- 2011-07-30
- Volume
- 40
- Issue
- 5
- Pages
- 1314-1328
- ISSN
- 0300-5771 (ISSN-L)
- 1464-3685
- PMC
- PMC3204208
- OpenAlex
- W2117662116
- Cited by
- 101
- References
- 21
- Citations by year
- 2026: 3 · 2025: 2 · 2024: 10 · 2023: 6 · 2022: 13 · 2021: 7 · 2020: 4 · 2019: 4 · 2018: 7 · 2017: 5 · 2016: 12 · 2015: 7 · 2014: 6 · 2013: 7 · 2012: 7
- FWCI
- 19.28
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- other-oa
- Locations
- International Journal of Epidemiology (publishedVersion, other-oa)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Leicester Research Archive (University of Leicester) (submittedVersion)
- HighWire Press Open Archive (submittedVersion)
- ANU Open Research (Australian National University) (submittedVersion)
- University of Groningen research database (University of Groningen / Centre for Information Technology) (submittedVersion, other-oa)
- Bristol Research (University of Bristol) (submittedVersion)
- Funders
- Wellcome Trust (086160/Z/08/A)
- Agence Nationale de la Recherche (ANR-11-INBS-0002)
- University of Western Sydney
- National Institutes of Health
- Topics
- Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
- Physical Sciences › Mathematics › Statistics and Probability › Statistical Methods in Epidemiology
- Physical Sciences › Environmental Science › Health, Toxicology and Mutagenesis › Health, Environment, Cognitive Aging
- Keywords
- data synthesis, questionnaire administration mode, chronic disease risk factors
- MeSH terms
- Chronic Disease, Data Collection, Data Interpretation, Statistical, Epidemiologic Methods, Humans, Surveys and Questionnaires, Retrospective Studies, Risk Factors, Cohort Studies, Databases, Factual
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
