Kidney Precision Medicine Project - Patient Engagement
Kidney Precision Medicine Project - Patient Engagement
批准号:
10492871
负责人:
ROBERT Daniel TOTO
金额:
$45.0万
依托单位国家:
美国
项目类别:
财政年份:
2022
资助国家:
美国
项目状态:
未结题
起止时间:
2022-09-15 至 2027-06-30
关键词:
AddressAdverse eventAdvocateAffectAfrican AmericanAmericanBiologicalBiological FactorsBiopsyBloodCOVID-19 pandemicCaringCase StudyCessation of lifeChronic Kidney FailureClinicalClinical DataClinical ResearchClinical and Translational Science AwardsCollaborationsCollectionCommunitiesConsentCoupledDataDiabetes MellitusDiagnosisDoctor of PhilosophyElectronic Health RecordEnd stage renal failureEnrollmentEnsureEthicsEvaluationFacultyFecesFeedbackFocus GroupsFosteringFutureGoalsHealth systemHealthcare SystemsHispanicHypertensionIndividualInformation TechnologyInterventionInterviewKidneyKidney DiseasesKidney FailureKnowledgeLatinx populationLeadershipLinkLongitudinal cohort studyMedicalMetadataMethodologyMethodsModelingMolecularNursesNursing ResearchOutcomeParticipantPathologicPatient RecruitmentsPatient-Focused OutcomesPatientsPhenotypePhysiciansPoliciesPopulationPositioning AttributePrecision Medicine InitiativePrivatizationProceduresProcessProspective StudiesProtocols documentationPublic HealthPublicationsQuestionnairesReportingResearchResearch PersonnelSafetySamplingScientistShippingSiteSocioeconomic FactorsStructureSystemTimeTissue BanksTissuesUnderrepresented PopulationsUnderserved PopulationUnited States National Institutes of HealthUpdateUrineVulnerable PopulationsWorkadjudicationclinical diagnosisclinical phenotypecohortcommunity engagementdesigndiabeticfollow-uphigh riskhypertensiveimprovedinformatics toolinnovationkidney biopsymembernovelnovel strategiesoperationpatient engagementpatient orientedpatient populationpersonalized carephenotypic dataprecision medicineprimary outcomeradiologistrecruitsafety netsocioeconomicssoundsuccess
中文摘要
项目摘要
英文摘要
Project Summary Abstract
The current understanding of the pathophysiologic and socio-economic processes that initiate CKD and
the paths by which they progress to ESRD are poorly understood, resulting in limited treatments. There is a
compelling unmet need for prospective studies to accurately phenotype patients with CKD using a combination
of kidney biopsy, clinical, biologic, and socioeconomic factors to develop individualized care to improve patient
outcomes. Over the past four years, at the local level we assembled a highly skilled, interdisciplinary team of
clinical researchers, physician-scientists, clinicians, research nurses, patient advocates and a Community
Advisory Board. This team designed, implemented and sustained a highly successful, ethically sound and safe
recruitment site (RS) for the Kidney Precision Medicine Project: 1) We performed the very first KPMP consortium
kidney biopsy in September 2019 and were the first RS in the consortium to perform 30 kidney biopsies,
successfully enrolling patients with a clinical diagnosis of hypertensive or diabetic chronic kidney disease and
yielding sufficient tissue for research protocols as well as for pathological diagnosis; 2) We collected and linked
clinical, biological and socioeconomic data of the biopsy participants; 3) We focused our efforts on African-
American and Latinx populations at a very high rate in order to address the disproportionate burden of CKD as
well as the historical lack of inclusion of these populations in cljnical research, mandated by the NIH, completing
22 out of 11 (73%) of biopsies among these groups. At the consortium level our team members have made
meaningful contributions to the major organizational and operational aspects of KPMP.
The main goal in this proposal will be population identification, patient recruitment and obtaining clinical
phenotype data, biosamples and kidney biopsies. To accomplish this goal we will 1) Identify, recruit, enroll, and
biopsy 34 patients annually from 3 large HS serving more than 51,996 patients with CKD and diabetes and/ or
hypertension and follow patients longitudinally; 2) Implement ethically-sound, systematic quality-assured
processes to obtain clinical and demographic data, bio-samples and kidney biopsies from patients with CKD in
a longitudinal clinical study; and 3) Develop and implement patient-centered processes to promote long-term
engagement and retention of study participants in KPMP. Our successful track record as a recruitment site for
procurement of kidney tissue from patients with CKD attributed to diabetes or hypertension from a large, diverse
patient population makes us an ideal site for the continuation of the KPMP. Our ability to recruit patients from
multiple health systems with novel informatics tools, an ethically rigorous approach to consenting for kidney
biopsy and coupled with a rigorous and safe methodology is a powerful combination we bring to the KPMP. Our
innovative approach to this FOA will not only provide the data to generate new knowledge to improve both the
diagnosis and treatment of CKD, but also serve as a model for future kidney precision medicine initiatives and
their expansion over time.
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会议论文
Kidney Precision Medicine Project - Patient Engagement
-
批准号:10701778
-
项目类别:
-
资助金额:$45.0万
-
财政年份:2022
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine
-
批准号:10412141
-
项目类别:
-
资助金额:$794.05万
-
财政年份:2021
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine
-
批准号:10349035
-
项目类别:
-
资助金额:$802.96万
-
财政年份:2021
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine
-
批准号:10614619
-
项目类别:
-
资助金额:$793.3万
-
财政年份:2021
-
负责人:ROBERT Daniel TOTO
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依托单位:
Association of baseline and time-varying serum magnesium levels with cardiovascular disease events in SPRINT participants with and without chronic kidney disease
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批准号:9815059
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项目类别:
-
资助金额:$12.97万
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财政年份:2019
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负责人:ROBERT Daniel TOTO
-
依托单位:
Chronic Kidney Disease Precision Medicine Project
-
批准号:10223908
-
项目类别:
-
资助金额:$30.0万
-
财政年份:2017
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负责人:ROBERT Daniel TOTO
-
依托单位:
Chronic Kidney Disease Precision Medicine Project
-
批准号:9911026
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项目类别:
-
资助金额:$30.0万
-
财政年份:2017
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL1/KL2/TL1
-
批准号:8721031
-
项目类别:
-
资助金额:$70.35万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL1/KL2/TL1)
-
批准号:9065628
-
项目类别:
-
资助金额:$536.08万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL1/KL2/TL1)
-
批准号:8915945
-
项目类别:
-
资助金额:$9.72万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL1/KL2/TL1
-
批准号:8743346
-
项目类别:
-
资助金额:$92.96万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL1/KL2/TL1
-
批准号:9064887
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项目类别:
-
资助金额:$69.39万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL18Kl2/TL1)
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批准号:8721034
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项目类别:
-
资助金额:$10.59万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL18Kl2/TL1)
-
批准号:9064888
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项目类别:
-
资助金额:$11.03万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL18Kl2/TL1)
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批准号:9269645
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项目类别:
-
资助金额:$8.4万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL1/KL2/TL1)
-
批准号:8721036
-
项目类别:
-
资助金额:$297.24万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL1/KL2/TL1)
-
批准号:8743348
-
项目类别:
-
资助金额:$531.77万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL18Kl2/TL1)
-
批准号:8743347
-
项目类别:
-
资助金额:$10.73万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL1/KL2/TL1)
-
批准号:8866498
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项目类别:
-
资助金额:$521.7万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
-
依托单位:
UT Southwestern Center for Translational Medicine (UL1/KL2/TL1)
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批准号:9269634
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项目类别:
-
资助金额:$553.51万
-
财政年份:2013
-
负责人:ROBERT Daniel TOTO
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依托单位:
海外基金