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Kidney Precision Medicine Project - Patient Engagement

肾脏精准医学项目 - 患者参与

基本信息

批准号：
10492871
负责人：
ROBERT Daniel TOTO
金额：
$ 45万
依托单位：
UT SOUTHWESTERN MEDICAL CENTER
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-09-15 至 2027-06-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10492871
关键词：
Address Adverse event Advocate Affect African American American Biological Biological Factors Biopsy Blood COVID-19 pandemic Caring Case Study Cessation of life Chronic Kidney Failure Clinical Clinical Data Clinical Research Clinical and Translational Science Awards Collaborations Collection Communities Consent Coupled Data Diabetes Mellitus Diagnosis Doctor of Philosophy Electronic Health Record End stage renal failure Enrollment Ensure Ethics Evaluation Faculty Feces Feedback Focus Groups Fostering Future Goals Health system Healthcare Systems Hispanic Hypertension Individual Information Technology Intervention Interview Kidney Kidney Diseases Kidney Failure Knowledge Latinx population Leadership Link Longitudinal cohort study Medical Metadata Methodology Methods Modeling Molecular Nurses Nursing Research Outcome Participant Pathologic Patient Recruitments Patient-Focused Outcomes Patients Phenotype Physicians Policies Population Positioning Attribute Precision Medicine Initiative Privatization Procedures Process Prospective Studies Protocols documentation Public Health Publications Questionnaires Reporting Research Research Personnel Safety Sampling Scientist Shipping Site Socioeconomic Factors Structure System Time Tissue Banks Tissues Underrepresented Populations Underserved Population United States National Institutes of Health Update Urine Vulnerable Populations Work adjudication clinical diagnosis clinical phenotype cohort community engagement design diabetic follow-up high risk hypertensive improved informatics tool innovation kidney biopsy member novel novel strategies operation patient engagement patient oriented patient population personalized care phenotypic data precision medicine primary outcome radiologist recruit safety net socioeconomics sound success

项目摘要

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.

项目摘要