Exploring the Attitudes and Use of Family Cancer History and Biospecimen Collecti

探索家族癌症史和生物样本收藏的态度和使用

• 批准号: 8211629
• 负责人: Denise A Dillard
• 金额: $ 15.02万
• 依托单位: ALASKA NATIVE TRIBAL HEALTH CONSORTIUM
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-09-20 至 2014-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8211629
• 关键词: Address; Alaska; Alaska Native; Area; Asians; Attitude; Awareness; Breast; Cause of Death; Centers for Disease Control and Prevention (U.S.); Characteristics; Chronic Disease; Clinical; Collaborations; Collection; Colon; Colorectal; Communicable Diseases; Communities; Computer software; Computerized Medical Record; Data; Diabetes Mellitus; Diagnosis; Disease; Epidemiology; Epigenetic Process; Esophagus; Family; Family Cancer History; Family health status; Family history of; Focus Groups; Funding; Gallbladder; Genetic; Genetic Predisposition to Disease; Genetic Research; Genetic Risk; Genetic screening method; Genomics; Goals; Health; Health Personnel; Health system; Healthy People 2020; Heart Diseases; Incidence; Individual; Intervention; Interview; Interviewer; Investigation; Kidney; Life; Life Style; Link; Liver; Lung; Malignant Neoplasms; Malignant neoplasm of pharynx; Malignant neoplasm of prostate; Medical History; Medicine; Methods; Modeling; Morbidity - disease rate; Native-Born; Oropharyngeal; Pancreas; Phase; Pilot Projects; Policies; Population; Population Heterogeneity; Prevention; Prevention strategy; Prostate; Provider; Public Health; Questionnaires; Rare Diseases; Recording of previous events; Rectum; Renal carcinoma; Research; Research Methodology; Research Personnel; Risk; Role; Rural; Rural Community; Sampling; Science; Self-Administered; Stomach; Stroke; Surgeon; Surveys; System; Tribes; United States National Institutes of Health; Woman; anticancer research; cancer diagnosis; cancer genomics; cancer prevention; cancer risk; clinical practice; colorectal cancer screening; community based participatory research; disease registry; disorder prevention; disorder risk; empowerment; experience; genetic variant; improved; interest; malignant breast neoplasm; member; men; mortality; population based; population health; preference; programs; research and development; research study; symposium; tool; tribal health

DESCRIPTION (provided by applicant): Cancer was a rare disease in the 1950s, when the leading cause of death among Alaska Native (AN) people was due to infectious diseases. Today, cancer is the leading cause of death among AN people. Cancer mortality among AN men and women greatly exceeds that of US White, Asian, and AI/AN populations (10). Cancer incidence rates are significantly higher among AN people compared to US Whites for lung, colorectal, stomach, kidney, liver, gallbladder, pancreas, esophagus and oral/pharyngeal cancers. The most frequently diagnosed cancers among AN women are breast (30 percent), colorectal (19 percent) and lung (13 percent). Leading cancers among AN men are: lung (20 percent), colorectal (19 percent) and prostate (13 percent). This pilot project will assess the acceptability and feasibility of collecting and storing biospecimens from AN people living in a rural community for the purposes of cancer research. We anticipate that this research will provide a model approach for other AN communities to use family health history and biospecimen collection to reduce their risks of chronic disease, including cancer. The proposed study will include three phases: 1) Collaboration with a rural AN community and consensual development of the research approach to obtaining family health history and biospecimens for genetic and epigenetic studies; 2) Determination of the community-preferred method for the collection of family history data: self-administered vs. interview administered family health history, and identification of concerns and preferences regarding biospecimen collection through focus groups and survey questionnaires; and 3) Upon community approval, collection of biospecimens for a study of genetic variants and cancer risk. Results of this project could promote dialogue in other communities among ANs and healthcare providers on the value of recording family health history. We anticipate that results generated by the family history software will motivate some individuals to make healthy lifestyle choices to reduce cancer and other disease risks. This research will provide a greater understanding of biospecimen collection and genetic research concerns among ANs living in a rural Alaska community. The groundwork of biospecimen collection will provide a mechanism to establish a larger-scale biospecimen banking for this or other communities. Throughout this project as researchers, we hope to increase our understanding of culturally appropriate approaches to discussions and practices in family health history, biospecimen collection and cancer genomic research. PUBLIC HEALTH RELEVANCE: Public health is practiced to improve the health of populations, primarily through disease prevention; and the activities of this project, family health history collection, exploring the concerns around biospecimen collection, and conducting a genetic test, share the goals of engaging community members in discussions of cancer risks and prevention strategies, and in the promotion of healthier lifestyles. The collection of biospecimens for future research has the potential to identify disease risks early in individuals as well as in the population.

描述（由申请人提供）：癌症在20世纪50年代是一种罕见的疾病，当时阿拉斯加原住民（AN）的主要死因是传染病。今天，癌症是AN人死亡的主要原因。AN男性和女性的癌症死亡率大大超过美国白色、亚洲和AI/AN人群（10）。与美国白人相比，AN人群的肺癌、结直肠癌、胃癌、肾癌、肝癌、胆囊癌、胰腺癌、食道癌和口腔癌/咽癌的发病率明显较高。AN妇女中最常诊断的癌症是乳腺癌（30%），结直肠癌（19%）和肺癌（13%）。AN男性的主要癌症是：肺癌（20%），结肠直肠癌（19%）和前列腺癌（13%）。该试点项目将评估为癌症研究目的收集和储存生活在农村社区的AN人的生物标本的可接受性和可行性。我们预计，这项研究将为其他AN社区提供一种模式方法，利用家族健康史和生物标本收集来降低他们患慢性疾病（包括癌症）的风险。拟议的研究将包括三个阶段：1）与农村AN社区合作，并协商一致地制定研究方法，以获得家族健康史和生物标本，用于遗传和表观遗传研究; 2）确定社区首选的收集家族史数据的方法：自我管理与访谈管理的家庭健康史，通过焦点小组和调查问卷确定对生物样本采集的关注和偏好;以及3）在社区批准后，采集生物样本用于遗传变异和癌症风险研究。该项目的结果可以促进在其他社区的AN和医疗保健提供者之间的对话记录家庭健康史的价值。我们预计，家族史软件产生的结果将激励一些人选择健康的生活方式，以减少癌症和其他疾病的风险。这项研究将提供一个更好的了解生物标本收集和遗传研究的关注之间的AN生活在阿拉斯加农村社区。生物标本收集的基础工作将提供一个机制，为这个社区或其他社区建立一个更大规模的生物标本库。在整个项目中，作为研究人员，我们希望增加我们对家庭健康史，生物标本收集和癌症基因组研究中文化适当方法的理解。 公共卫生相关性：公共卫生主要通过疾病预防来改善人口健康;该项目的活动包括家庭健康史收集、探讨生物标本收集方面的问题以及进行基因测试，这些活动的共同目标是让社区成员参与讨论癌症风险和预防战略，并促进更健康的生活方式。为未来研究收集生物标本有可能在个人和人群中早期识别疾病风险。