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Sociodemographic trends in prostate cancer: insights from the All of Us Research Program.

BACKGROUND: Prostate cancer disproportionately affects vulnerable populations. The All of Us Research Program (AoURP) is a database that aims to encapsulate the diversity of the United States. To explore the utility of this dataset in assessing prostate cancer disparities, we investigated whether treatment usage, disease progression, and genomic research participation vary across sociodemographic factors among AoURP participants with prostate cancer. METHODS: We identified AoURP participants with prostate cancer. Genomic research participation in AoURP, treatment usage, time-to-treatment, and time-to-metastasis were assessed by demographics and distance from a National Cancer Institute-designated comprehensive cancer center. Multivariable logistic regression and Cox proportional hazards regression were performed to evaluate treatment usage and time-to-treatment and time-to-metastasis, respectively. RESULTS: We observed lower genomic data availability in Black vs White patients (P&#x2009;<&#x2009;.001). In multivariable analyses, patients residing more than 80 miles from an NCI-designated comprehensive cancer center were less likely to receive androgen receptor pathway inhibitors (odds ratio [OR]&#x2009;=&#x2009;0.30, 95% CI = 0.14 to 0.66; P&#x2009;=&#x2009;.002) and bone targeting agents (OR&#x2009;=&#x2009;0.46, 95% CI = 0.30 to 0.70; P&#x2009;<&#x2009;.001) but more likely to undergo prostatectomy (OR&#x2009;=&#x2009;1.97, 95% CI = 1.43 to 2.71; P&#x2009;<&#x2009;.001) than those&#x2009;residing less than&#x2009;40 miles away. These patients also initiated treatment faster (hazard ratio [HR]&#x2009;=&#x2009;1.54, 95% CI = 1.27 to 1.87; P&#x2009;<&#x2009;.001) and developed metastasis slower (HR&#x2009;=&#x2009;0.58, 95% CI = 0.40 to 0.86; P&#x2009;=&#x2009;.006). Black patients were less likely to receive radiation (OR&#x2009;=&#x2009;0.45, 95% CI = 0.23 to 0.88; P&#x2009;=&#x2009;.020), prostatectomy (OR&#x2009;=&#x2009;0.65, 95% CI = 0.44 to 0.96; P&#x2009;=&#x2009;.028), and bone targeting agents (OR&#x2009;=&#x2009;0.65, 95% CI = 0.45 to 0.93; P&#x2009;=&#x2009;.018) than White patients. CONCLUSIONS: Prostate cancer treatment usage, disease progression, and genomic research participation varied between demographic populations. As AoURP matures, additional studies may leverage future data releases to confirm these findings.

Aged

Evaluating Patient Experience With Genomic Medicine: A Content Analysis of National Cancer Institute-Designated Cancer Centers' Websites.

BACKGROUND: National Cancer Institute-designated cancer centers (NCI-CCs) throughout the United States are mandated to translate state-of-the-art cancer research to communities and enhance clinical care for patients within their catchment areas. NCI-CCs play a vital role in national cancer initiatives focused on optimizing cancer care via personalized medicine in which improved risk assessment, screening, and genetic testing are foundational. In this era of targeted personalized care, although genetics has been incorporated into cancer centers, it is unknown how these innovations are being communicated to the public and communities served on cancer center websites. There is particularly limited knowledge surrounding how NCI-CCs publicly communicate their efforts to integrate patient-reported experiences with genomics to fulfill their overall mission and reduce the cancer burden in their catchment areas. OBJECTIVE: The objective of this study was to evaluate how NCI-CCs publicly share information on their websites related to cancer center programming and activities to measure and incorporate patients' experiences with the use of genetics to guide cancer care. METHODS: For all NCI-CCs providing clinical care (N=65), we conducted a review of publicly available and published information and assessed five domains relevant to patients' experiences with genomic medicine: whether NCI-CCs (1) provided genetic testing, (2) directly expressed a goal of delivering personalized care, (3) provided pharmacogenomic testing, (4) assessed patient-reported experience measures with genomic medicine (including patient-reported outcomes [PROs] and other patient experience measures [OPEMs]), and (5) indicated an established infrastructure or set of resources to evaluate patient experience. We conducted a content analysis of the publicly available websites of NCI-CCs using the validated directed approach to content analysis. We quantified the results of our content analysis using count measures based on a binary (yes or no) coding scheme. RESULTS: While almost all the NCI-CCs (64/65, 98%) discussed providing personalized care and performing genetic testing on their websites, we found that 58% (38/65) indicated online that they assessed PROs or other patient experience measures with genomic medicine. Fewer centers (25/65, 38%) discussed on their websites having a mechanism for evaluating patients' experiences with genomic medicine that captured broader types of information beyond PROs, such as measures of patient education or care team communication. Finally, approximately 1 in 3 NCI-CCs (23/65, 35%) indicated having an established infrastructure with departmental resources dedicated to monitoring patients' experiences. These centers reflecting a built-in infrastructure were 8% to 12% more likely to publicly communicate targeted activities to assess patients' experiences with genomic medicine. CONCLUSIONS: With the burgeoning use of genomics in research and clinical care, comprehensive evaluation and incorporation of measures of patients' experiences with genomic medicine present a key opportunity to enhance cancer care at NCI-CCs.

Humans

Development and extensive sequencing of a broadly-consented Genome in a Bottle matched tumor-normal pair.

The Genome in a Bottle Consortium (GIAB), hosted by the National Institute of Standards and Technology (NIST), is developing new matched tumor-normal samples, the first explicitly consented for public dissemination of genomic data and cell lines. Here, we describe a comprehensive genomic dataset from the first individual, HG008, including DNA from an adherent, epithelial-like pancreatic ductal adenocarcinoma (PDAC) tumor cell line and matched normal cells from duodenal and pancreatic tissues. Data for the tumor-normal matched samples comes from seventeen distinct state-of-the-art whole genome measurement technologies, including high depth short and long-read bulk whole genome sequencing (WGS), single cell WGS, Hi-C, and karyotyping. These data will be used by the GIAB Consortium to develop matched tumor-normal benchmarks for somatic variant detection. We expect these data to facilitate innovation for whole genome measurement technologies, de novo assembly of tumor and normal genomes, and bioinformatic tools to identify small and structural somatic variants. This first-of-its-kind broadly consented open-access resource will facilitate further understanding of sequencing methods used for cancer biology.

Humans