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The Connect for Cancer Prevention Study (“Connect”) is expected to be a prospective cohort of at least 200,000 adults in the United States (U.S.). Connect is designed to investigate the etiology of cancer and its outcomes, and to inform new approaches in precision prevention and early detection. Connect is led by the National Cancer Institute, in partnership with ten partner health care systems: Health Partners (Minneapolis and St. Paul metro area); Henry Ford Health System (Detroit metro area); Kaiser Permanente Colorado (Denver metro area), Georgia (Atlanta metro area), Hawaii (Kauai, Oahu, Maui, and Hawaii islands), and Northwest (Salem to Portland, OR and parts of SW WA); Marshfield Clinic (north-central WI); Sandford Health (Sioux Falls, SD; Fargo, ND; Bismarck, ND; Bemidjj, MN areas); University of Chicago (metro area); and, Baylor, Scott and White Health (Dallas, Ft Worth, Waco, Austin, San Antonio, TX).
Eligible participants are members or patients from participating integrated healthcare systems who are between the ages of 30-70 years and have no personal history of invasive cancer (other than non-melanoma skin cancer at the time of recruitment). Recruitment efforts are aimed to promote participation of individuals from diverse backgrounds and geographic areas. Participant recruitment began in the summer of 2021 and is expected to continue through 2028. Participants are recruited by the partner health care systems using site-specific strategies. Consent, user profile information for verification, communication, and coordination of study activities occur electronically through a secure, progressive web application (or “app”) (PWA), called MyConnect.
Participants complete online questionnaires at baseline and periodically throughout the duration of follow-up and provide access to their electronic medical records (EMRs). Baseline and biospecimen survey content can be found here. Blood, urine, and mouthwash samples are collected at baseline and repeatedly throughout follow-up. Along with serial biological specimens, new specimens will be collected during follow-up, such as stool and tissue. Passive follow-up via tumor registries and electronic health records (EHRs) provide outcome information for cancers and their precursors.
Participant and operational study data reside in the Connect for Cancer Prevention Data System (C4CPDS) that is structured to ensure security of the data and appropriate governance. Curated, deidentified versions of the data will be made available to the scientific community (timeline TBD). Connect is expected to provide a rich data resource for innovative cancer prevention research and a myriad of other research applications for future generations.
This state-of-the-art cohort is built with an efficient, flexible, and integrated infrastructure that makes the most of modern interoperability standards and adherence to F.A.I.R. (findability, accessibility, interoperability, and reusability of research resources) principles.
Visit this publication for more information on the Connect infrastructure. The Connect data infrastructure and data sharing policies are designed to maximize the potential for scientific discovery while ensuring appropriate use of the resource and the NIH data sharing policy. Safeguards for privacy, confidentiality, and appropriate use of study resources are in place to protect participants’ expectations, information, and biospecimens. While the cohort has been designed for innovative cancer prevention research, the rich resource will be available to the broader scientific community following access protocols in the near future. To learn more about Connect, check out the Connect Overview Presentation, Executive Summary, Informed Consent (Long form), study protocol, Recruitment SOP, and Verification SOP.
Further questions about the Connect for Cancer Prevention Study can be directed to Mia M. Gaudet, Ph.D., Senior Scientist, Division of Cancer Epidemiology and Genetics, National Cancer Institute.