-
Notifications
You must be signed in to change notification settings - Fork 5
Approved Projects
Below is a list of projects related to the Connect for Cancer Prevention Study. Currently only projects internal to the Connect Study Team are approved.
Lay Summary: This project establishes the foundation for genetic research within the Connect Study by detailing how biological samples are processed into high-quality genetic data. We will document the rigorous steps used to clean and verify the genetic information, ensuring its accuracy for the scientific community. By mapping the genetic backgrounds of participants, we demonstrate that the study represents a wide range of global ancestries, which is essential for making health discoveries that apply to everyone. Finally, we will validate this resource by replicating established genetic findings and risk models. The foundational work of this project will ensure that the genetic data collected from Connect participants can be used by researchers to better understand cancer risk.
Lead Investigator(s): Jayati Sharma, Mitchell Machiela, Phillip Kraft, National Cancer Institute
Approval Date: March 27, 2026
Title: Evaluating Recruitment Strategies for a Longitudinal Cohort Recruitment Across Four Geographically Diverse Integrated Healthcare Systems
Lay Summary: This project will describe the methods and results of four recruitment strategies the Connect Kaiser Permanente regions piloted. This work is useful to understand how such strategies could impact Connect enrollment and participation at Kaiser Permanente Colorado, Northwest, Georgia, and Hawaii. The four recruitment approaches include: 1. a combination of text, email, and brochure outreach; 2. phone outreach; 3. in-person recruitment at select Kaiser Permanente clinics via Connect study team members; and 4. MyChart messaging via the Kaiser Permanente patient portal.
Lead Investigator(s): Larissa White, Kaiser Permanente Colorado
Approval Date: 12/05/2025
Title: Boosting Male Participation: Exploring Motivation and Strategies for Participation in Research
Lay Summary: We conducted interviews to better understand how to increase male participation in observational studies, focusing on the Connect for Cancer Prevention Study. We explored attitudes toward research, preferences for learning about new study opportunities, and strategies for engaging men in research. The analysis will identify key themes and inform recommendations for improving male engagement in research.
Lead Investigator(s): Roxan Andre, Kaiser Permanente Georgia
Approval Date: 10/21/2025
Title: Boosting Male Participation: Exploring Motivation and Strategies for Participation in Research
Lay Summary: Getting men to join long-term health studies is crucial for advancing medical research and improving public health. We conducted individual and group interviews to understand how to increase male participation in studies like the Connect for Cancer Prevention Study. Our goals were to learn what motivates men to join, develop better recruitment strategies, and find ways to keep current male participants engaged over time. We interviewed male Kaiser Permanente Northwest members—both study participants enrolled in the Connect study and those eligible to join.
Lead Investigator(s): Dea Papajorgji-Taylor, Kaiser Permanente NW
Approval Date: 10/21/2025
Title: “Anything to Help Find a Cure” or “It Doesn’t Seem Worth It”: Using Behavior Theory to understand motivation and barriers to observational cohort study participation
Lay Summary: By systematically capturing and reflecting on how potential participants respond to our team’s Connect Study recruitment calls, we have an opportunity to better understand barriers and motivators to study participation. We documented comments made over the course of recruitment calls from both people who decided to and decided not to join Connect. We then analyzed these data to inform recruitment processes.
Lead Investigator(s): Meghan JaKa, HealthPartners Institute
Approval Date: 8/12/2025
Title: Creating a Standardized EHR Analytics Data Source for the National Cancer Institute’s Connect for Cancer Prevention Study
Lay Summary: Electronic health record (EHR) data contains valuable medical information that can advance cancer prevention research when combined with self-reported survey information. The Connect for Cancer Prevention study collects EHR data from healthcare sites nationwide in OMOP (Observational Medical Outcomes Partnership) format, but different sites use varying versions of the OMOP standard.
The Connect Coordinating Center developed cloud-based software that automatically validates, standardizes, and processes these different OMOP versions into a unified research database. This approach allows sites to contribute data in their existing OMOP format without requiring uniform standards. Our conference abstract and poster will demonstrate how this flexible framework enables scalable, large-scale multi-site medical research studies.
Lead Investigator(s): Edward Frankenberger & Dr. Nicole Gerlanc, National Cancer Institute
Approval Date: 7/14/2025
Lay Summary: The purpose of this study is to describe who participates in the Connect for Cancer Prevention Study. Using electronic health records, we examine patterns in consent, survey completion, record sharing and biospecimen donation in one Connect recruitment site over the first years of study recruitment.
Lead Investigator(s): Dr. Jeanette Ziegenfuss, HealthPartners Institute
Approval Date: 4/23/2025
Lay Summary: This study worked with stakeholders to start building a conceptual model for understanding how research participation affects patients and health systems. Using two types of survey data—from research participants and health plan members—we tested the model’s usefulness. This early work lays the foundation for measuring individual and organizational impacts of participation.
Lead Investigator(s): Dr. Jeanette Ziegenfuss, HealthPartners Institute
Approval Date: 3/13/2025
Title: The Connect for Cancer Prevention Study Biospecimen Appointment Self-scheduling - REDCap External Module – Poster Presentation REDCap Con 2024
Lay Summary: The REDCap External Module (EM) developed for the Connect for Cancer Prevention Study, sponsored by the National Cancer Institute, streamlines self-scheduling of research lab appointments. Developed and integrated at HealthPartners, one of the study sites, it allows participants to self-schedule, cancel, and reschedule appointments via a mobile-responsive interface. From January to June 2024, 55% of completed appointments were scheduled through the module, enhancing user experience, and reducing scheduling calls to the study team by 41%. The module’s design supports efficient operations and can be repurposed at other Connect sites and for other studies, saving effort and resources.
Lead Investigator(s): Vijayakumar Thirumalai, HealthPartners Institute
Approval Date: 12/16/2024
Lay Summary: Running a concordance analysis of self-reported race/ethnicity data received via the Connect study and comparing that to the race/ethnicity data in KPGA’s Virtual Data Warehouse (VDW).
Lead Investigator(s): Roxan Andre, Kaiser Permanente Georgia
Approval Date: 12/3/2024
Lay Summary: The Connect for Cancer Prevention Study uses a novel approach to code jobs to standardized occupation codes (SOC). The questions job title and job tasks are used to predict potential SOC codes using an auto-coding algorithm called SOCcer. This populates a list of potential SOC codes from which the participant selects the best fitting classification or selects ‘none of the above’. We propose to evaluate the effectiveness of SOCcer-assisted coding within an online questionnaire and to identify potential improvements.
Lead Investigator(s): Dr. Melissa Freisen, National Cancer Institute
Approval Date: 12/3/2024
Lay Summary: This study tested different messages in invitation letters to see which ones encourage more people to join the Connect for Cancer Prevention Study. Using ideas from behavior change theory, five message versions were compared across several sites. The goal was to learn which messages work best overall and for different groups of people.
Lead Investigator(s): Dr. Jeanette Ziegenfuss, HealthPartners Institute
Approval Date: 12/3/2024
Lay Summary: The study of cannabis use and disease has been hampered by a lack of data. We aim to describe the development of a questionnaire designed to evaluate lifetime cannabis use in the Connect for Cancer Prevention Study. We adapted existing questionnaires focused on capturing tobacco cigarette use to assess use of common forms of cannabis. The cannabis questionnaire underwent extensive review, including focus group testing. It was deployed to Connect participants as part of the baseline survey, starting in 2022 and is available for others to use. Assessing cannabis use in epidemiologic studies is needed to examine whether cannabis use is associated with cancer and other health outcomes.
Lead Investigator(s): Dr. Neal Freedman, National Cancer Institute
Approval Date: 11/26/2024
Lay Summary: Cancer and cardiovascular disease (CVD) share many of the same risk factors, which can lead to both conditions occurring together. Lifestyle habits like smoking, poor diet, lack of exercise, and excessive drinking increase the chances of developing both cancer and CVD. Conditions such as obesity, high blood pressure, and high cholesterol also play a role by causing inflammation and stress in the body, which contribute to the development of both diseases. In addition, environmental factors like pollution and exposure to certain chemicals can increase the risk of both. Some cancer treatments, such as chemotherapy and radiation, can also raise the risk of heart conditions. Understanding the connection between cancer and CVD is important for finding ways to prevent and treat both diseases together. An interim data release will provide rich learnings towards establishing the broad value of Connect beyond cancer research.
Lead Investigator(s): Dr. Veronique Roger, National Heart, Lung, and Blood Institute
Approval Date: 10/21/2024
Lay Summary: Infectious agents play an important role in a wide range of diseases, including cancer. Large observational studies, including prospective cohort studies like Connect, are critical to evaluate the role of microbial agents in human carcinogenicity. While it can be difficult to detect the timepoint of a specific infection, antibody responses against bacterial and viral infections can serve as an indirect measure of exposure to infectious agents over the lifetime. We are evaluating a multiplex serology assay that can detect antibodies against a number of infectious agents in a subset of up to 9,000 Connect participants. We will evaluate the assay performance in Connect, estimate how common antibodies against different infectious agents occur in the Connect population, and study whether having antibodies is associated with demographic, geographic, and other factors that are assessed in Connect.
Lead Investigator(s): Dr. Nicolas Wentzensen, National Cancer Institute
Approval Date: 10/21/2024
Title: Biospecimen collections for cancer etiology and prevention research in the Connect for Cancer Prevention Study: Rationale, approach, and key metrics
Lay Summary: Biospecimens play an important role in studies on cancer causes and prevention. They can help understand the biological processes involved in cancer development, and they can be used for cancer risk assessment and early detection studies. The desire to collect many biospecimens to address these goals need to be weighed against the burden to study participants and the cost to collect, process, and store biospecimens in a large prospective cohort study. This manuscript describes the rationale of biospecimen collections for the different aims of Connect, and the implementation of biospecimen protocols with key metrics of success.
Lead Investigator(s): Dr. Nicolas Wentzensen, National Cancer Institute
Approval Date: 6/12/2023