Abstract
BackgroundInternational collaborative cohorts the NINFEA and the ELF studies are mother-child cohorts that use the internet for recruitment and follow-up of their members. The cohorts investigated the association of early life exposures and a wide range of non-communicable diseases.ObjectiveThe objective is to report the research methodology, with emphasis on the advantages and limitations offered by an Internet-based design. These studies were conducted in Turin, Italy and Wellington, New Zealand.MethodsThe cohorts utilized various online/offline methods to recruit participants. Pregnant women who became aware volunteered, completed an online questionnaire, thus obtaining baseline information.ResultsThe NINFEA study has recruited 7003 pregnant women, while the ELF study has recruited 2197 women. The cohorts targeted the whole country, utilizing a range of support processes to reduce the attrition rate of the participants. For the NINFEA and ELF cohorts, online participants were predominantly older (35% and 28.9%, respectively), highly educated (55.6% and 84.9%, respectively), and were in their final trimester of pregnancy (48.5% and 53.6%, respectively).ConclusionsInternet-based cohort epidemiological studies are feasible, however, it is clear that participants are self-selective samples, as is the case for many birth cohorts. Internet-based cohort studies are potentially cost-effective and novel methodology for conducting long-term epidemiology research. However, from our experience, participants tend to be self-selective. In marked time, if the cohorts are to form part of a larger research program they require further use and exploration to address biases and overcome limitations.
Highlights
Health research is becoming increasingly complex due to the employment of complex protocols; large sample sizes; and novel participant retention strategies [1,2] resulting in increased research costs [3] and low response rates
Nascita e INFanzia gli Effetti dell’Ambiente (NINFEA) is a dynamic cohort with ongoing recruitment and a minimum target of 7,500 participants; we report data last downloaded in March 2015
Selected characteristics of the study participants of the Early Life Factors (ELF) study are reported in Table 3, stratified by method of participation
Summary
Health research is becoming increasingly complex due to the employment of complex protocols (eg, birth and pregnancy cohort studies); large sample sizes; and novel participant retention strategies [1,2] resulting in increased research costs [3] and low response rates. There are different forms of electronic-based methods that can be used for health research, namely, (1) low-technology methods, such as e-mails with appended surveys; (2) electronic bulletin boards, such as an electronic message distribution system set up by independent operators; and (3) the World Wide Web, such as free online research tools. The latter approach requires more comprehensive systems, such as software-specific programs for the research, and it is technically more demanding than low-technology systems [5].
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