Skip to main content
An official website of the United States government
Email

Connect for Cancer Prevention Study

Scientific Summary

The Connect for Cancer Prevention Cohort Study is a new prospective cohort of 200,000 adults in the United States designed to further investigate the etiology of cancer and its outcomes, which may inform new approaches in precision prevention and early detection. The new cohort capitalizes on research innovations to advance the field of cancer epidemiology and prevention including:

  1. New technologies for exposure assessment (e.g., tracking and sensors to measure behavior and environment);
  2. Large-scale analyses of the genome, epigenome, transcriptome, proteome, metabolome, microbiome;
  3. Molecular profiling of tumors and precursor lesions.

Overview of Study Setting and Design

The Connect for Cancer Prevention Study (“Connect”) is being conducted within a set of integrated health care systems to recruit 200,000 members or patients between the ages of 40-65 years with no personal history of invasive cancer (other than non-melanoma skin cancer at the time of recruitment), based on an NIH IRB-approved protocol. Recruitment efforts are aimed to promote participation of individuals from diverse backgrounds and geographic areas.

Consented participants are asked to complete an online questionnaire at baseline and periodically throughout the duration of follow-up, as well as provide access to their electronic medical records (EMRs). Blood, urine, and saliva samples are collected at baseline and repeatedly during follow-up. During follow-up, serial biological specimens as well as new specimens, including tissue specimens, are collected. Passive follow-up via tumor registries and EMRs provides outcome information for cancers and their precursors. 

Communication and coordination of study activities occur electronically through a participant application (“app”) available for desktop or mobile devices. This state-of-the-art cohort is built with an efficient, flexible, and integrated infrastructure designed to  make the most of modern interoperability standards in order to serve as a research resource for future generations of scientists at the NCI and across the broader scientific community.

Connect is supported by the NIH Intramural Research Program.

Access the interactive transcript and audio-described version of "What is the Connect for Cancer Prevention Study?".

What is the Connect for Cancer Prevention Study?

Initial contracts for study recruitment were awarded to the following healthcare institutions:

  • HealthPartners, Minneapolis, MN
  • Henry Ford Health, Detroit, MI
  • Kaiser Permanente Colorado, Denver, CO
  • Kaiser Permanente Georgia, Atlanta, GA
  • Kaiser Permanente Hawaii, Honolulu, HI
  • Kaiser Permanente Northwest, Portland, OR
  • Marshfield Clinic Health System, Marshfield, WI
  • Sanford Health, Sioux Falls, SD
  • University of Chicago Medical Center, Chicago, IL

Timeline

Recruitment through the partnering health care institutions was launched in 2021 and will continue through 2026. Serial questionnaires, biospecimen collection, EHR data collection, data linkages and passive follow-up activities will occur during the duration of the study, which is expected to be for decades. Visit the participant recruitment website.

Study Team

Coordinating Center for the Connect for Cancer Prevention Study

Scientific Development Working Groups

Connect assets have been developed by investigators at DCEG and the broader scientific community. The Study Team is grateful for these contributions that have led to the study protocol and surveys.

Structural and Social Determinants of Health

Scope

Develop conceptual model and measures of social inequities, including structural racism, built and social environment, social cohesion, and social capital.

Members

  • Paula Braveman, University of San Francisco
  • Cheryl Clark, Brigham and Women's Hospital, Harvard University
  • Gilbert Gee, University of California, Los Angeles
  • Scarlett Gomez, University of California, San Francisco
  • Brad Greenwood, George Mason University
  • Kekoa Taparra, Stanford University
  • Sean Valles, Michigan State University
  • David Williams, Harvard T.H. Chan School of Public Health

Breast Cancer Screening

Scope

Develop protocol for transferring images, pilot protocol, consider self-reported survey module

Leadership

Gretchen Gierach, Ph.D., M.P.H.

Diet

Scope

Implementation of Diet History Questionnaire (DHQ) at six months and ASA24 at 12 months post-enrollment; return of results

Leadership

Erikka Loftfield, Ph.D., M.P.H.

Electronic Medical Records

Scope

Define technical details of transfer, frequency, replace data 

Leadership

Megan Clarke, Ph.D., M.H.S. (lead); Toniya Brown and Aileen Cunnane (CCC coordinators)

GWAS

Scope

Develop ancestral algorithm, return of results and approach, oversight of QC metrics, display of data at multiple layers of access 

Leadership

Mitchell Machiela, Sc.D, M.P.H. (lead); Dominique Hopkins (CCC coordinator)

Liquid Biopsy

Scope

Develop protocol for serial biospecimen collection for future assays; define study participants of interest; develop complementary data collection

Leadership

Dr. Wentsenzen (lead; CGB), Ms. Hopkins (CCC coordinator)

Microbiome

Scope

Develop protocol for stool collection during follow-up and microbiome assays; obtain funding for entire cohort; return of results

Leadership

Emily Vogtmann, Ph.D., M.P.H. (lead), Dr. Horner (CCC coordinator)

Precursor Ascertainment (Benign Breast Biopsies and Colorectal Adenomas)

Scope

Develop an algorithm for the ascertainment of prevalent and incident precursor lesions, starting with benign breast biopsies and colorectal adenomas.

Leadership

Dr. Clarke (lead), Ms. Cunnane (CCC coordinator)

Rapid Case Ascertainment

Scope

Develop rapid case ascertainment algorithm and define technical details of data transfer

Leadership

Dr. Clarke (lead), Ms. Cunnane (CCC coordinator)

Return of Results - Genetic Information

Scope

Develop specifications to return individual-level study information to participants

Leadership

Megan Frone, M.S., C.G.C. (lead), Dr. Horner (CCC coordinator)

Return of Results - Geocoded Exposures

Scope

Develop specifications to return individual-level study information to participants 

Leadership

Rena Jones, Ph.D., M.S. (lead), Dr. Horner (CCC coordinator)

Surveys: Cancer Screening History

Scope

Develop surveys related to cancer site-specific screening, diagnostic modality, and symptoms

Leadership

Dr. Neal D. Freedman (lead; DCCPS – TCRB), Julie Cusack (CCC coordinator)

Surveys: Cancer Survivorship 

Scope

Develop survey timing and frequency relative to diagnosis and content

Leadership

Dr. Freedman (lead; DCCPS – TCRB), Ms. Cusack (CCC coordinator)

Surveys: Hair Products

Scope

Develop survey on hair straighteners, relaxers, colorants, and windows of exposure over the life-course

Leadership

Stella Koutros, Ph.D., M.P.H. (lead), Dr. Katie O'Brien (co-lead), Ms. Cusack (CCC coordinator)

Surveys: Menstrual and Intimate Care Products 

Scope

Develop survey on menstrual and intimate care products and windows of exposure over the life-course

Leadership

Dr. O'Brien (lead), Ms. Cunnane (CCC coordinator), Ms. Cusack (CCC coordinator)

Surveys: Naphthalene and Scented Products

Scope

Develop survey on household exposures to naphthalene-containing products (e.g. mothballs) and other scented household products

Leadership

Sonja Berndt, Pharm.D., Ph.D. (lead); Ms. Cusack (CCC coordinator)

Surveys: Structural and Social Determinants of Health

Scope

Develop conceptual model and measures of social inequities, including structural racism, built and social environment, social cohesion, and social capital

Leadership

Dr. Lawrence (lead), Dr. Joseph (co-lead), Ms. Thomas (CCC Coordinator)

Tissues

Scope

Collection and sampling of benign breast biopsy, colorectal adenomas, other precursor lesions, cancer tissues

Leadership

Mustapha Abubakar, M.D., Ph.D. (lead)

Resource Sharing Principles for Research

The principles of the Connect for Cancer Prevention Study data and biospecimen sharing policy will support extensive and appropriate use of the resource, consistent with NIH policy. Safeguards for privacy and confidentiality will be in place to protect participants’ data and biospecimens. Any researchers wishing to use the resources from the cohort will need to complete an application. The process will vary for biospecimens and depend on the sensitivity of the requested data. 

To improve data traceability and reproducibility of analyses and results according to FAIR (Findable, Accessible, Interoperable, Reusable) data principles, Connect data access will be granted through a cloud-hosted Connect for Cancer Prevention Data Platform. The Data Platform will facilitate access to raw and derived data, metadata, data dictionaries, and annotated code to all platform users. 

All projects approved for data and sample use will be noted on the study website, including project summaries and study team descriptions. 

For more information, contact Mia Gaudet.

Email