1887
Perspective Open Access
Like 0

Abstract

Establishing population-based cohorts is indispensable for effective epidemic prevention, preparedness and response. Existing passive surveillance systems face limitations in their capacity to promptly provide representative data for estimating disease burden and modelling disease transmission. This perspective paper introduces a framework for establishing a dynamic and responsive nationally representative population-based cohort, with Germany as an example country. We emphasise the need for comprehensive demographic representation, innovative strategies to address participant attrition, efficient data collection and testing using digital tools, as well as novel data integration and analysis methods. Financial considerations and cost estimates for cohort establishment are discussed, highlighting potential cost savings through integration with existing research infrastructures and digital approaches. The framework outlined for creating, operating and integrating the cohort within the broader epidemiological landscape illustrates the potential of a population-based cohort to offer timely, evidence-based insights for robust public health interventions during both epidemics and pandemics, as well as during inter-epidemic periods.

Loading

Article metrics loading...

/content/10.2807/1560-7917.ES.2025.30.25.2400255
2025-05-26
2025-06-30
/content/10.2807/1560-7917.ES.2025.30.25.2400255
Loading
Loading full text...

Full text loading...

/deliver/fulltext/eurosurveillance/30/25/eurosurv-30-25-5.html?itemId=/content/10.2807/1560-7917.ES.2025.30.25.2400255&mimeType=html&fmt=ahah

References

  1. Szklo M. Population-based cohort studies. Epidemiol Rev. 1998;20(1):81-90.  https://doi.org/10.1093/oxfordjournals.epirev.a017974  PMID: 9762511 
  2. Beesley LJ, Osthus D, Del Valle SY. Addressing delayed case reporting in infectious disease forecast modeling. PLOS Comput Biol. 2022;18(6):e1010115.  https://doi.org/10.1371/journal.pcbi.1010115  PMID: 35658007 
  3. Abat C, Chaudet H, Rolain J-M, Colson P, Raoult D. Traditional and syndromic surveillance of infectious diseases and pathogens. Int J Infect Dis. 2016;48:22-8.  https://doi.org/10.1016/j.ijid.2016.04.021  PMID: 27143522 
  4. Elliott P, Whitaker M, Tang D, Eales O, Steyn N, Bodinier B, et al. Design and implementation of a National SARS-CoV-2 Monitoring Program in England: REACT-1 Study. Am J Public Health. 2023;113(5):545-54.  https://doi.org/10.2105/AJPH.2023.307230  PMID: 36893367 
  5. Razuri H, Romero C, Tinoco Y, Guezala MC, Ortiz E, Silva M, et al. Population-based active surveillance cohort studies for influenza: lessons from Peru. Bull World Health Organ. 2012;90(4):318-20.  https://doi.org/10.2471/BLT.11.097808  PMID: 22511830 
  6. Klein C, Borsche M, Balck A, Föh B, Rahmöller J, Peters E, et al. One-year surveillance of SARS-CoV-2 transmission of the ELISA cohort: A model for population-based monitoring of infection risk. Sci Adv. 2022;8(15):eabm5016.  https://doi.org/10.1126/sciadv.abm5016  PMID: 35427158 
  7. Moser A, Carlander M, Wieser S, Hämmig O, Puhan MA, Höglinger M. The COVID-19 Social Monitor longitudinal online panel: Real-time monitoring of social and public health consequences of the COVID-19 emergency in Switzerland. PLoS One. 2020;15(11):e0242129.  https://doi.org/10.1371/journal.pone.0242129  PMID: 33175906 
  8. Penninx BWJH, Benros ME, Klein RS, Vinkers CH. How COVID-19 shaped mental health: from infection to pandemic effects. Nat Med. 2022;28(10):2027-37.  https://doi.org/10.1038/s41591-022-02028-2  PMID: 36192553 
  9. Kuper H, Lopes Moreira ME, Barreto de Araújo TV, Valongueiro S, Fernandes S, Pinto M, et al. The association of depression, anxiety, and stress with caring for a child with Congenital Zika Syndrome in Brazil; Results of a cross-sectional study. PLoS Negl Trop Dis. 2019;13(9):e0007768.  https://doi.org/10.1371/journal.pntd.0007768  PMID: 31568478 
  10. Ward H, Atchison C, Whitaker M, Davies B, Ashby D, Darzi A, et al. Design and implementation of a national program to monitor the prevalence of SARS-CoV-2 IgG antibodies in England using self-testing: The REACT-2 Study. Am J Public Health. 2023;113(11):1201-9.  https://doi.org/10.2105/AJPH.2023.307381  PMID: 37733993 
  11. Koopmans M, de Lamballerie X, Jaenisch T, Rosenberger KD, Morales I, Marques ETA, et al. Familiar barriers still unresolved-a perspective on the Zika virus outbreak research response. Lancet Infect Dis. 2019;19(2):e59-62.  https://doi.org/10.1016/S1473-3099(18)30497-3  PMID: 30420230 
  12. Tilch K, Hopff SM, Appel K, Kraus M, Lorenz-Depiereux B, Pilgram L, et al. Ethical and coordinative challenges in setting up a national cohort study during the COVID-19 pandemic in Germany. BMC Med Ethics. 2023;24(1):84.  https://doi.org/10.1186/s12910-023-00959-0  PMID: 37848886 
  13. Tacconelli E, Gorska A, Carrara E, Davis RJ, Bonten M, Friedrich AW, et al. Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response. Lancet Reg Health Eur. 2022;21:100467.  https://doi.org/10.1016/j.lanepe.2022.100467  PMID: 35942201 
  14. Rico-Uribe LA, Morillo-Cuadrado D, Rodríguez-Laso Á, Vorstenbosch E, Weser AJ, Fincias L, et al. Worldwide mapping of initiatives that integrate population cohorts. Front Public Health. 2022;10:964086.  https://doi.org/10.3389/fpubh.2022.964086  PMID: 36262229 
  15. Lange B, Jaeger VK, Harries M, Rücker V, Streeck H, Blaschke S, et al. Estimates of protection levels against SARS-CoV-2 infection and severe COVID-19 in Germany before the 2022/2023 winter season: the IMMUNEBRIDGE project. Infection. 2024;52(1):139-53.  https://doi.org/10.1007/s15010-023-02071-2  PMID: 37530919 
  16. Tinoco YO, Azziz-Baumgartner E, Uyeki TM, Rázuri HR, Kasper MR, Romero C, et al. Burden of influenza in 4 ecologically distinct regions of Peru: household active surveillance of a community cohort, 2009-2015. Clin Infect Dis. 2017;65(9):1532-41.  https://doi.org/10.1093/cid/cix565  PMID: 29020267 
  17. Wagenaar BH, Augusto O, Ásbjörnsdóttir K, Akullian A, Manaca N, Chale F, et al. Developing a representative community health survey sampling frame using open-source remote satellite imagery in Mozambique. Int J Health Geogr. 2018;17(1):37.  https://doi.org/10.1186/s12942-018-0158-4  PMID: 30373621 
  18. Bosnjak M, Dannwolf T, Enderle T, Schaurer I, Struminskaya B, Tanner A, et al. Establishing an Open Probability-Based Mixed-Mode Panel of the General Population in Germany: The GESIS Panel. Soc Sci Comput Rev. 2018;36(1):103-15.  https://doi.org/10.1177/0894439317697949 
  19. Goebel J, Grabka MM, Liebig S, Kroh M, Richter D, Schröder C, et al. The German Socio-Economic Panel (SOEP). Jahrb Natl Okon Stat. 2019;239(2):345-60.  https://doi.org/10.1515/jbnst-2018-0022 
  20. Centerdata. LISS-Longitudinal Internet studies for the Social Sciences panel n.d. Tilburg: Centerdata. [Accessed: 8 May 2025]. Available from: https://www.lissdata.nl
  21. European Centre for Disease Prevention and Control (ECDC). Assessing the burden of key infectious diseases affecting migrant populations in the EU/EEA. Stockholm: ECDC; 2014. Available from: https://www.ecdc.europa.eu/en/publications-data/assessing-burden-key-infectious-diseases-affecting-migrant-populations-eueea
  22. Universitätsmedizin Greifswald. NU(M)KRAINE: Infektionsmedizinisches Screeningprogramm des Netzwerks Universitätsmedizin für Flüchtlinge der Ukraine. [NU(M)KRAINE - Infectious Disease Screening Program of the University Medicine Network for Refugees from Ukraine]. Greifswald: Universitätsmedizin Greifswald. [Accessed: 8 May 2025]. German. Available from: https://www.medizin.uni-greifswald.de/num/forschungsprojekte/netzwerk-universitaetsmedizin/numkraine
  23. Rogan WJ, Gladen B. Estimating prevalence from the results of a screening test. Am J Epidemiol. 1978;107(1):71-6.  https://doi.org/10.1093/oxfordjournals.aje.a112510  PMID: 623091 
  24. Eaton JW, Bao L. Accounting for nonsampling error in estimates of HIV epidemic trends from antenatal clinic sentinel surveillance. AIDS. 2017;31(Suppl 1) Suppl 1;S61-8.  https://doi.org/10.1097/QAD.0000000000001419  PMID: 28296801 
  25. Peters A, Peters A, Greiser KH, Göttlicher S, Ahrens W, Albrecht M, et al. Framework and baseline examination of the German National Cohort (NAKO). Eur J Epidemiol. 2022;37(10):1107-24.  https://doi.org/10.1007/s10654-022-00890-5  PMID: 36260190 
  26. Selin K, Zimmermann S. SOEP Group. SOEPcompanion (v38) 2023. Berlin: DIW Berlin/SOEP. [Accessed: 6 May 2025]. Available from: https://www.econstor.eu/bitstream/10419/273538/1/185378723X.pdf
  27. Tigges BB, Kaar JL, Erbstein N, Silberman P, Winseck K, Lopez-Class M, et al. Effectiveness of community outreach and engagement in recruitment success for a prebirth cohort. J Clin Transl Sci. 2017;1(3):184-91.  https://doi.org/10.1017/cts.2017.7  PMID: 29082032 
  28. Bartig S, Brücker H, Butschalowsky H, Danne C, Gößwald A, Goßner L, et al. Corona Monitoring Nationwide (RKI-SOEP-2): seroepidemiological study on the spread of SARS-CoV-2 across Germany. Jahrb Natl Okon Stat. 2022;243(3-4):431-49.  https://doi.org/10.1515/jbnst-2022-0047 
  29. Abshire M, Dinglas VD, Cajita MIA, Eakin MN, Needham DM, Himmelfarb CD. Participant retention practices in longitudinal clinical research studies with high retention rates. BMC Med Res Methodol. 2017;17(1):30.  https://doi.org/10.1186/s12874-017-0310-z  PMID: 28219336 
  30. Teague S, Youssef GJ, Macdonald JA, Sciberras E, Shatte A, Fuller-Tyszkiewicz M, et al. Retention strategies in longitudinal cohort studies: a systematic review and meta-analysis. BMC Med Res Methodol. 2018;18(1):151.  https://doi.org/10.1186/s12874-018-0586-7  PMID: 30477443 
  31. European Centre for Disease Prevention and Control (ECDC). Assessing the burden of key infectious diseases affecting migrant populations in the EU/EEA. Stockholm: ECDC; 2014. Available from: https://www.ecdc.europa.eu/en/publications-data/assessing-burden-key-infectious-diseases-affecting-migrant-populations-eueea
  32. Eurostat. Methodological guidelines and description of EU-SILC target variables. Brussels: European Commission; 2022. [Accessed: 26 May 2025]. Available from: https://circabc.europa.eu/d/a/workspace/SpacesStore/94141a49-a4a7-48bc-89f7-df858c27d016/Methodological%20guidelines%202022%20operation%20v4.pdf
  33. Ortmann J, Heise J-K, Janzen I, Jenniches F, Kemmling Y, Frömke C, et al. Suitability and user acceptance of the eResearch system "Prospective Monitoring and Management App (PIA)"-The example of an epidemiological study on infectious diseases. PLoS One. 2023;18(1):e0279969.  https://doi.org/10.1371/journal.pone.0279969  PMID: 36595548 
  34. Mirjalali S, Peng S, Fang Z, Wang CH, Wu S. Wearable Sensors for Remote Health Monitoring: Potential Applications for Early Diagnosis of Covid-19. Adv Mater Technol. 2022;7(1):2100545.  https://doi.org/10.1002/admt.202100545  PMID: 34901382 
  35. Mathis WS, Zhao S, Pratt N, Weleff J, De Paoli S. Inductive thematic analysis of healthcare qualitative interviews using open-source large language models: How does it compare to traditional methods? Comput Methods Programs Biomed. 2024;255:108356.  https://doi.org/10.1016/j.cmpb.2024.108356  PMID: 39067136 
  36. Tosta S, Moreno K, Schuab G, Fonseca V, Segovia FMC, Kashima S, et al. Global SARS-CoV-2 genomic surveillance: What we have learned (so far). Infect Genet Evol. 2023;108:105405.  https://doi.org/10.1016/j.meegid.2023.105405  PMID: 36681102 
  37. Scheithauer S, Dilthey A, Bludau A, Ciesek S, Corman V, Donker T, et al. Etablierung der Genomischen Erreger-Surveillance zur Stärkung des Pandemie- und Infektionsschutzes in Deutschland. [Establishment of genomic pathogen surveillance to strengthen pandemic preparedness and infection prevention in Germany]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2023;66(4):443-9. German.  https://doi.org/10.1007/s00103-023-03680-w  PMID: 36811648 
  38. Nguyen HT, Denkinger CM, Brenner S, Koeppel L, Brugnara L, Burk R, et al. Cost and cost-effectiveness of four different SARS-CoV-2 active surveillance strategies: evidence from a randomised control trial in Germany. Eur J Health Econ. 2023;24(9):1545-59.  https://doi.org/10.1007/s10198-022-01561-8  PMID: 36656403 
  39. Cherif A, Grobe N, Wang X, Kotanko P. Simulation of Pool Testing to Identify Patients With Coronavirus Disease 2019 Under Conditions of Limited Test Availability. JAMA Netw Open. 2020;3(6):e2013075.  https://doi.org/10.1001/jamanetworkopen.2020.13075  PMID: 32573706 
  40. Mikolajczyk R, Diexer S, Fricke J, Ahnert P, Pischon T, Karch A. Description of the COVID 2.0 survey in the NAKO and first results. Eur J Public Health. 2023;33(Supplement_2):ckad160.502.  https://doi.org/10.1093/eurpub/ckad160.502 
  41. Jit M, Ananthakrishnan A, McKee M, Wouters OJ, Beutels P, Teerawattananon Y. Multi-country collaboration in responding to global infectious disease threats: lessons for Europe from the COVID-19 pandemic. Lancet Reg Health Eur. 2021;9:100221.  https://doi.org/10.1016/j.lanepe.2021.100221  PMID: 34642675 
  42. CORDIS - EU research results. Connecting European cohorts to increase common and effective response to SARS-CoV-2 pandemic: ORCHESTRA. Brussels: European Commission; 2020. Available from: https://cordis.europa.eu/project/id/101016167
  43. Bundesinstitut für Bevölkerungsforschung. Zahl der Privathaushalte und durchschnittliche Haushaltsgröße in Deutschland (1991-2040). [Number of private households and average household size in Germany (1991-2040)]. Wiesbaden: BiB; 2023. German. Available from: https://www.bib.bund.de/DE/Fakten/Fakt/L50-Privathaushalte-Haushaltsgroesse-1991-Vorausberechnung.html
/content/10.2807/1560-7917.ES.2025.30.25.2400255
Loading

Data & Media loading...

Supplementary data

Submit comment
Close
Comment moderation successfully completed
This is a required field
Please enter a valid email address
Approval was a Success
Invalid data
An Error Occurred
Approval was partially successful, following selected items could not be processed due to error