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Dylan Clark-Boucher 1 Article
Epidemiologic Questionnaire (EPI-Q) – a scalable, app-based health survey linked to electronic health record and genotype data
Maxwell Salvatore, Dylan Clark-Boucher, Lars G. Fritsche, Jacob Ortlieb, Janet Houghtby, Anisa Driscoll, Bryanne Caldwell-Larkins, Jennifer A. Smith, Chad M. Brummett, Sachin Kheterpal, Lynda Lisabeth, Bhramar Mukherjee
Epidemiol Health. 2023;45:e2023074.   Published online August 8, 2023
DOI: https://doi.org/10.4178/epih.e2023074
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Abstract
The Epidemiologic Questionnaire (EPI-Q) was established to collect broad, uniform, self-reported health data to supplement electronic health record (EHR) and genotype information from participants in the University of Michigan (UM) Precision Health cohorts. Recruitment of EPI-Q participants, who were already enrolled in 1 of 3 ongoing UM Precision Health cohorts—the Michigan Genomics Initiative, Mental Health Biobank, and Metabolism, Endocrinology, and Diabetes cohorts—began in March 2020. Of 54,043 retrospective invitations, 5,577 individuals enrolled, representing a 10.3% response rate. Of these, 3,502 (63.7%) were female, and the average age was 56.1 years (standard deviation, 15.4). The baseline survey comprises 11 modules on topics including personal and family health history, lifestyle, and cancer screening and history. Additionally, 11 optional modules cover topics including financial toxicity, occupational exposure, and life meaning. The questions are based on standardized and validated instruments used in other cohorts, and we share resources to expedite development of similar surveys. Data are collected via the MyDataHelps platform, which enables current and future participants to share non-Michigan Medicine EHR data. Recruitment is ongoing. Cohort data are available to those with institutional review board approval; for details, contact the Data Office for Clinical and Translational Research (DataOffice@umich.edu).
Summary
Key Message
The Epidemiologic Questionnaire (EPI-Q) is an app-based, scalable health survey that collects broad, self-reported data to augment an electronic health record-linked biobank – the Michigan Genomics Initiative. Of an initial 54,043 invitations (recruitment is ongoing), 5,577 participants enrolled (10.3% response rate) and were invited to complete 11 baseline modules (including personal and family health history, lifestyle, and cancer screening and history) and 11 optional modules (including financial toxicity, occupational exposure, and life meaning). Questions are based on standardized and validated instruments used in other cohort studies and documentation is shared publicly to accelerate development of similar surveys.

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