Story 01
Summary
The Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network is engaging people in cancer genomics research to make new discoveries.
Current State
There is a need for reduced barriers and enhanced opportunities to participate in cancer research so that all populations may benefit from cancer research findings.
Strategy
- Ensure that opportunities to participate in and benefit from research are equitably distributed.
- Develop and implement methods to return research results in meaningful ways to patients who participate in studies.
DCCPS Contribution
The PE-CGS Network was launched as part of the Cancer Moonshot to use participant engagement approaches to address knowledge gaps about the molecular changes in tumors for individuals with rare cancers, cancers with high disparities, and cancers in understudied populations. This type of data is needed for these individuals to benefit from advances in cancer genomics.
Participants are the foundation of the PE-CGS Network. The funded research centers have partnered with patient advocates, community members, and study participants since the inception of this program. These centers serve as resources for their research participants, returning information such as individual genetic results and information about cancer to participants. Participant engagement also includes building trust with communities included in the research to improve the conduct of the study so that participants are more able and interested in participating and improving the quality and relevance of the research to the participants.
Through this research, the network is learning how to better partner and engage with participants and will use this information to develop best practices for engagement that will be shared with the broader research community. As highlighted at the 2024 American Association for Cancer Research Annual Meeting, four of the PE-CGS research centers were awarded funding to further enhance community partnerships by supporting inclusion of additional community health educators, Spanish translation, development of genetics educational materials and training programs, and focus groups to learn more about community perspectives around genetics and genomics. The PE-CGS Network is learning more about unique perspectives of each community and the importance of adapting to community needs.
As of June 2024, over 1,500 individuals completed consent forms, 837 individuals provided tumor samples, and 458 tumors were sequenced by the PE-CGS Network. This already represents an increase in the diversity of participants, based on self-identified race and ethnicity, compared to existing genomic databases. Specifically, the PE-CGS data include a large number of tumors from people with rare cancers that are difficult to study using existing cohorts. In preliminary findings, the network observed novel genetic variants in these cancers and is working to understand the potential role of these variants. Moreover, data from the network also suggest that incorporating results from multiple types of molecular assays helps with the interpretation of genetic findings. When these projects are completed, we will learn a lot about how best to engage participants in cancer genomics research, including returning results to participants. These projects will also address gaps in understanding of the molecular changes in tumors and serve as a resource for the research community.
Story 02
Also related to Eliminate Inequities.
Summary
NCI’s Surveillance, Epidemiology, and End Results (SEER) Program captures information on all cancers diagnosed within participating states and regions, making every cancer count.
Current State
While clinical trials require voluntary participation, cancer registries collect data for a defined population as mandated for reportable diseases. Research data must include representation from all people, regardless of racial/ethnic, geographic, socioeconomic, and other subgroups.
Observing the risk of developing cancer, the treatments received, and outcomes, and understanding how these measures change over time, enable us to identify areas to intervene to improve outcomes and eliminate inequities among specific populations.
Strategy
- Enable every patient to contribute their health data and biospecimens to research in a secure, privacy-protected manner that honors their wishes for the use of these resources to conduct cancer research.
- Ensure that opportunities to participate in and benefit from research are equitably distributed.
- Ensure that all areas of cancer research address population-specific diversity in biological and societal factors that impede successful cancer diagnosis, prevention, treatment, and survivorship.
DCCPS Contribution
The SEER registries have provided population-based cancer statistics for over 50 years. During that time, the SEER Program has grown to include 48% of the US population, and representation of specific populations has increased. In collaboration with national surveillance partners, including the Centers for Disease Control and Prevention, the American Cancer Society, and the North American Association of Central Cancer registries, SEER provides key information to the public, researchers, and policymakers on cancer incidence, survival, and prevalence in the United States. This information is critical for identifying and understanding emerging trends in risk and how risk and outcomes vary across specific populations. SEER data linked to treatment information provide the foundation for research investigating whether individuals receive the recommended treatment for their cancer diagnosis and how treatments vary by an individual’s demographics and other factors. In addition to reporting cancer statistics by race and ethnicity, SEER data have been linked to various social determinants of health based on patients’ residence at the time of diagnosis, such as measures of socioeconomic status, poverty, and rural versus urban county or census tract. This information gives further insight into observed disparities and informs research to develop and target interventions to areas that will have the greatest impact on outcomes for all cancer patients.
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