Abstract
Due to evolving population demographics, altered exposures, and new technology, new cohorts need to be initiated. Here we report our efforts from a pilot cohort study of the 10,000 Families Study (10KFS). The goal of the pilot is to establish the infrastructure, protocols, and standard operating procedures for a larger study that would provide the data to further our understanding of the determinants of health across the life course and intergenerational transmission of environmental, genetic, and epigenetic risk factors. We have focused on cancer, as this is the leading cause of death in Minnesota. Data collection methods include online questionnaires and attendance at a health fair for various physical and biologic measurements. For this family-based study, a family is eligible if at least one member of two, preferably three, generations enrolls, and each member is willing, or willing for their child(ren), to provide DNA from blood or saliva. To facilitate eventual scale-up of the cohort, we developed and implemented a database system to electronically manage eligibility screening, enrollment, questionnaire administration, and health fair scheduling. Family enrollment is initiated when an index participant is screened for eligibility online. When the database detects a new eligible index participant, custom scripts execute a set of actions that includes sending emails to the index participant with instructions for family expansion, sending links for the online questionnaire to all family members who join, scheduling appointments at upcoming health fairs, and any reminders for steps not completed. Automated reports are generated nightly to update the investigator website about enrollment, data completeness, and follow-up. We have pilot tested our recruitment procedures with individuals attending the 2017 and 2018 Minnesota State Fair, one of the largest public gatherings in the upper Midwest. To date, 1,273 index participants have been screened. Of these, 151 successfully enrolled another eligible family member for a total of 519 participants. Thus far, 138 participants have attended a health fair. Participant ages range from less than a year to over 90 (median 48 among adults and 7 among children). Next, we intend to expand recruitment methods including traditional and social media, develop an electronic remote consent process, establish electronic feeds of medical records from Minnesota healthcare systems, and create linkages with the state’s cancer registry.
Citation Format: DeAnn Lazovich, Colin Campbell, Heather Nelson, Jen Poynter, Anna Prizment, Sara Putnam, Cavan Reilly, Michelle Roesler, Logan Spector, Bharat Thyagarajan. Establishing feasibility of a new cohort: The 10,000 Families Study [abstract]. In: Proceedings of the AACR Special Conference on Modernizing Population Sciences in the Digital Age; 2019 Feb 19-22; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(9 Suppl):Abstract nr A24.
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