Experiences and Outcomes in Early Adopters of Predispositional Sequencing
倾向性测序早期采用者的经验和成果
基本信息
- 批准号:9980970
- 负责人:
- 金额:$ 80万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2018
- 资助国家:美国
- 起止时间:2018-09-21 至 2022-06-30
- 项目状态:已结题
- 来源:
- 关键词:AdultAdvocateAfrican AmericanAgeAmericanAttentionBenefits and RisksCaringClinicalClinical Practice GuidelineCommunity Health NetworksConsentDNA SequenceDNA sequencingDataData AggregationDiagnosisDiseaseEnrollmentEnvironmentEuropeanFoundationsFrequenciesFundingFutureGeneral PopulationGenetic Predisposition to DiseaseGenomicsGoalsHealthHealth ExpendituresHealthcare SystemsHistorically Black Colleges and UniversitiesIatrogenesisIndividualIndustryInterviewInvestigationKnowledgeLeadLife StyleLongitudinal cohort studyMedicalMedicineMethodsMorbidity - disease rateNatureOnline SystemsOutcomeParticipantPatient Self-ReportPatientsPlanning TechniquesPopulationPractice GuidelinesPredispositionPreparationPreventionProcessProviderPsychological ImpactRaceReportingResearchResearch Project GrantsRiskServicesSurveysTestingTimeUnderrepresented GroupsUnderrepresented MinorityUnited States National Institutes of Healthbehavioral economicsclinical careclinical practiceclinically relevantclinically significantcohortcostdiet and exercisedisorder preventioneconomic impactexperiencefollow-upgenetic informationgenome sequencinghealth care service utilizationhealth managementinnovationinterestprecision medicinepreventprogramsrecruitresearch studysexvolunteer
项目摘要
PROJECT SUMMARY/ABSTRACT
The potential of genomic sequencing (GS) promises a new era of precision medicine in which
sequence information from healthy individuals can anticipate and prevent disease. At present, both the benefits
and harms of genomic sequencing conducted without indication are largely hypothetical. In this uncertain
environment, several thousand individuals have already had predispositional personal genome sequencing
(PPGS) through academic research projects or commercial services, and many thousands more are projected
to do so soon. The majority of these individuals are apparently healthy and would otherwise not receive GS
due to lack of medical necessity, but there is growing interest and activity in sequencing for non-diagnostic
purposes to enhance disease prevention and health management. Early adopters constitute a unique cohort of
individuals that are worthy of study before such testing becomes widespread. We have gathered a number of
these projects into a research consortium and piloted a web-based survey to better understand the medical,
behavioral and economic impacts of sequencing adults without indication. To date, nearly 1,400 individuals
have been invited to participate in our Personal Genome Sequencing Outcomes (PeopleSeq) Consortium, with
approximately 50% of individuals contacted enrolling in this preliminary study. A total of 658 individuals have
completed this preliminary survey after having their PPGS results disclosed, and we aim to add an additional
2,400 participants by partnering with new sequencing groups.
In this proposal, we present a plan and methodology to build upon our project’s foundation. We will
expand the opportunity to volunteer for sequencing to include potential participants from underrepresented
minorities by offering educational programs that include sequencing at several Historically Black institutions.
We will conduct web-based surveys over time and incorporate a mixed-methods approach by including
qualitative interviews among selected individuals. As the first longitudinal cohort study of mostly generally
healthy adults who receive PPGS, we will extensively evaluate the proposed risks and benefits of PPGS,
including short- and long-term impacts on healthcare utilization, psychological impact, and health-related
outcomes. We will determine what kinds of follow-up clinical care were obtained (and how it was covered
financially), and assess whether it was medically beneficial. Findings from our study will inform preparations in
the healthcare system as more individuals seek out and react to DNA sequencing. In addition, we will collect
actual genomic reports on consenting participants and will characterize the number and nature of clinically
significant findings. We will combine this genomic information with survey data about follow-up actions to
explore the potential of PPGS to provide clinically useful information that can assist in prevention and health
management.
项目总结/文摘
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
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Robert C. Green其他文献
Neighborhood topologies in central force optimization
- DOI:
10.1109/ssci.2017.8285384 - 发表时间:
2017-11 - 期刊:
- 影响因子:0
- 作者:
Robert C. Green - 通讯作者:
Robert C. Green
Family genetic risk communication and reverse cascade testing in the BabySeq project
婴儿序列项目中的家庭遗传风险沟通和反向级联测试
- DOI:
10.1016/j.gim.2024.101350 - 发表时间:
2025-03-01 - 期刊:
- 影响因子:6.200
- 作者:
Melissa K. Uveges;Hadley Stevens Smith;Stacey Pereira;Casie Genetti;Amy L. McGuire;Alan H. Beggs;Robert C. Green;Ingrid A. Holm;Pankaj B. Agrawal;Alan H. Beggs;Wendi N. Betting;Ozge Ceyhan-Birsoy;Kurt D. Christensen;Dmitry Dukhovny;Shawn Fayer;Leslie A. Frankel;Casie A. Genetti;Chet Graham;Robert C. Green;Amanda M. Gutierrez;Bethany Zettler - 通讯作者:
Bethany Zettler
Identification of functional variants from whole-exome sequencing, combined with neuroimaging genetics
通过全外显子组测序结合神经影像遗传学鉴定功能变异
- DOI:
- 发表时间:
2013 - 期刊:
- 影响因子:11
- 作者:
K. Nho;Jason J. Corneveaux;Sungeun Kim;Hai Lin;S. Risacher;L. Shen;S. Swaminathan;V. Ramanan;Yunlong Liu;T. Foroud;M. Inlow;A. Siniard;Rebecca Reiman;P. Aisen;Ronald C. Petersen;Robert C. Green;C. Jack;Michael W. Weiner;C. Baldwin;K. Lunetta;Lindsay A. Farrer;S. Furney;Simon Lovestone;Andrew Simmons;Patrizia Mecocci;Bruno Vellas;Magda Tsolaki;I. Kloszewska;H. Soininen;B. McDonald;M. Farlow;B. Ghetti;M. Huentelman;A. Saykin - 通讯作者:
A. Saykin
Liste de contrôle de l’Association canadienne des médecins d’urgence concernant le traitement de la sepsie: optimisation de la prise en charge de la sepsie au sein des services des urgences canadiens
加拿大脓毒症紧急医疗协会控制清单:加拿大脓毒症紧急服务奖的优化
- DOI:
10.2310/8000.2011.110610f - 发表时间:
2012 - 期刊:
- 影响因子:0
- 作者:
Dennis Djogovic;Robert C. Green;R. Keyes;Sara Gray;Robert Stenstrom;David Sweet;Jonathan S. Davidow;Edward Patterson;D. Easton;Shavaun MacDonald;Jonathan Gaudet;Michael R. Kolber;David Lechelt;D. Howes - 通讯作者:
D. Howes
Genetic counselors’ perspectives on genomic screening of apparently healthy newborns in the United States
- DOI:
10.1016/j.gimo.2024.101885 - 发表时间:
2024-01-01 - 期刊:
- 影响因子:
- 作者:
Maya C. del Rosario;Kathleen B. Swenson;Stephanie Coury;Jennifer Schwab;Robert C. Green;Nina B. Gold - 通讯作者:
Nina B. Gold
Robert C. Green的其他文献
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{{ truncateString('Robert C. Green', 18)}}的其他基金
Implementation of Whole Genome Sequencing as Screening in a Diverse Cohort of Healthy Infants
在不同健康婴儿群体中实施全基因组测序筛查
- 批准号:
10652609 - 财政年份:2021
- 资助金额:
$ 80万 - 项目类别:
Implementation of Whole Genome Sequencing as Screening in a Diverse Cohort of Healthy Infants
在不同健康婴儿群体中实施全基因组测序筛查
- 批准号:
10442366 - 财政年份:2021
- 资助金额:
$ 80万 - 项目类别:
Experiences and Outcomes in Early Adopters of Predispositional Sequencing
倾向性测序早期采用者的经验和成果
- 批准号:
9789918 - 财政年份:2018
- 资助金额:
$ 80万 - 项目类别:
Impact of Disclosing Amyloid Imaging Results to Cognitively Normal Individuals
公开淀粉样蛋白成像结果对认知正常个体的影响
- 批准号:
9518218 - 财政年份:2015
- 资助金额:
$ 80万 - 项目类别:
Integration of Whole Genome Sequencing into Clinical Medicine
全基因组测序融入临床医学
- 批准号:
8914756 - 财政年份:2011
- 资助金额:
$ 80万 - 项目类别:
Integration of Whole Genome Sequencing into Clinical Medicine
全基因组测序与临床医学的整合
- 批准号:
8826154 - 财政年份:2011
- 资助金额:
$ 80万 - 项目类别:
Integration of Whole Genome Sequencing into Clinical Medicine
全基因组测序融入临床医学
- 批准号:
8236471 - 财政年份:2011
- 资助金额:
$ 80万 - 项目类别:
Integration of Whole Genome Sequencing into Clinical Medicine
全基因组测序融入临床医学
- 批准号:
9173270 - 财政年份:2011
- 资助金额:
$ 80万 - 项目类别:
Integration of Whole Genome Sequencing into Clinical Medicine
全基因组测序融入临床医学
- 批准号:
8914780 - 财政年份:2011
- 资助金额:
$ 80万 - 项目类别:
Integration of Whole Genome Sequencing into Clinical Medicine
全基因组测序与临床医学的整合
- 批准号:
8586322 - 财政年份:2011
- 资助金额:
$ 80万 - 项目类别:
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