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Washington University School of Medicine Undiagnosed Diseases Network Clinical Site

华盛顿大学医学院未确诊疾病网络临床站点

基本信息

批准号：
10696751
负责人：
PATRICIA I DICKSON
金额：
$ 62.33万
依托单位：
WASHINGTON UNIVERSITY
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 2024-04-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10696751
关键词：
Academic Medical Centers Adult Area Awareness Basic Science Biological Models Biomedical Research Candidate Disease Gene Cell model Chairperson Child Childhood Clinical Clinical Research Clinical Sciences Clinical Services Clinical Trials Clinical and Translational Science Awards Collaborations Data Data Collection Data Coordinating Center Diagnosis Disease Disease Management Doctor of Philosophy Enrollment Equity Evaluation Expert Systems Family Frustration Funding Future Genes Genetic Genetic Research Genomics Goals Grant Healthcare Home Hospitals Human Genetics Immune System Diseases Individual Infrastructure Inherited Institution Insurance Intellectual and Developmental Disabilities Research Centers International Laboratory Study Letters Manuscripts Medical Medical Genetics Minority Groups National Center for Advancing Translational Sciences National Institute of Child Health and Human Development Neurology Outpatients Participant Patients Phase Physicians Population Precision Health Process Protocols documentation Publishing Pulmonology Rare Diseases Research Research Support Resources Rheumatology Rural Population Services Site Societies Source System Testing Toxicology Translational Research Underinsured Underrepresented Minority Underserved Population Uninsured United States National Institutes of Health Universities Variant Washington Work clinical research site cohort community partnership cost cost shifting data management data sharing ethnic diversity follow-up genome sequencing imaging study improved low socioeconomic status medical schools medical specialties metabolomics model organism non-genetic novel novel therapeutics outreach outreach program payment pediatric department precision medicine programs racial diversity recruit research clinical testing success systematic review underserved community whole genome

项目摘要

PROJECT SUMMARY/ABSTRACT The scientific premise of this application is that the individualized translational research process of the Undiagnosed Diseases Network (UDN) is sustainable and that its impact on patients, families, and disease discovery can be further extended by increasing its accessibility to a broader participant population. This application would support the Washington University in St. Louis (WUSTL) UDN Clinical Site. WUSTL School of Medicine and BJC Healthcare together represent a large academic medical center, hospital, and outpatient clinical system that is fully integrated with world-renowned basic science capabilities and demonstrated expertise in finding diagnoses for patients with undiagnosed diseases. The highly collaborative clinical and biomedical research culture at WUSTL School of Medicine promotes interactions within and across Departments, with institutional genomic, clinical, computational, and model system experts, and with colleagues regionally, nationally, and internationally. These interactions support recruitment, selection, evaluation, diagnosis discovery, and follow up of pediatric and adult patients with undiagnosed diseases through both established networks and individual referrals. Building on this infrastructure, we propose to continue to advance the success of the UDN in diagnosing and managing disease in undiagnosed patients by creating a new system for clinical and genomic review of applications and participant cases, with expanded clinical expertise to solve cases that are not suspected to have genetic underpinnings. Second, we aim to improve equity and access to the UDN for participants from underserved populations. In particular, we will focus our outreach program for underrepresented minority populations and populations with lower socioeconomic status. Third, we will develop and implement a sustainability plan that will shift the cost burden from research support where possible, while maintaining access for participants who are uninsured, under- insured, or otherwise unable to pay. We will work closely with the UDN network and Coordinating Center to study the barriers to achieving these goals and propose strategies to solve them.

项目总结/文摘