Pacific Northwest Undiagnosed Diseases Network Clinical Site

太平洋西北地区未确诊疾病网络临床站点

• 批准号: 10869122
• 负责人: Katrina M Dipple
• 金额: $ 28.28万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-15 至 2024-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10869122
• 关键词: Administrative Supplement; Alaska; Alaska Native; Area; Asian ancestry; Catchment Area; Collaborations; Diagnostic; Disease; Enrollment; Funding; Goals; Idaho; Individual; Lesbian Gay Bisexual Transgender Queer; Letters; Medical; Medical Students; Medical center; Montana; Oregon; Pacific Islander; Pacific Islands; Pacific Northwest; Participant; Patients; Pediatric Hospitals; Phase; Population; Rural; Rural Population; Sexual and Gender Minorities; South Asian; Underinsured; Underserved Population; Uninsured; Universities; Washington; Work; Wyoming; clinical research site; provider networks; rural area; underserved area

The Undiagnosed Disease Network (UDN) works with participants who have undergone a long diagnostic odyssey that has thus far not explained their medical condition. As a clinical site (CS) in the network since the beginning of phase II, the Pacific Northwest (PNW) CS reviews, accepts, and evaluates participants while developing strategies to end diagnostic odysseys. This requested supplement is an application for funds for activities not originally planned. The overall goal is to make the UDN accessible to more underserved participants. These new aims are: Aim 1: Increase UDN applications from rural and underserved areas of the PNW UDN CS. Aim 2: Enroll and evaluate 10 new rural and underserved participants. This administrative supplement is to focus on underserved populations including uninsured, underinsured, rural, gender and sexual minorities (LGBTQ+), Alaskan Natives, Pacific Islander descent and South Asians.To meet this need, we will leverage the long standing (decades) network we have at the University of Washington Medical Center (UWMC) and Seattle Children’s Hospital (SCH) that covers Washington, Wyoming, Alaska, Montana, and Idaho (WWAMI). UWMC and SCH have long standing relationships in the WWAMI region including medical students and residents in specific tracks in the region as well as a network of providers in all these states that refer complicated patients to our tertiary medical centers. Given the large land mass and relative small population, this area is enriched in rural and underserved populations (particularly in Eastern Washington, Idaho, Wyoming, and Alaska. In addition, Alaska has a lot of Alaskan natives and Western Washington has a large population of individuals with gender and sexual minorities (LGBTQ+), of Pacific Island and South Asian descent. Our catchment area for the PNW UDN CS overlaps the WWAMI region with which we have existing relationships. Therefore, we will be able to elicit applications from these underserved participants (See attached Letters of Support). Although not part of the WWAMI region, Oregon is also within our catchment area and we have longstanding relations with geneticists in that area who can identify and refer appropriate participants.

未诊断的疾病网络（UDN）与经历了长期诊断的参与者合作 到目前为止，奥德赛还没有解释他们的医疗状况。作为网络中的临床部位（CS） 第二阶段的开始，太平洋西北（PNW）CS评论，接受和评估参与者 制定结束诊断奥德赛的策略。此要求的补充是用于资金的申请 活动最初不是计划的。总体目标是使UDN访问更贫乏的服务 参与者。 这些新目标是： AIM 1：从PNW UDN CS的粗糙和服务不足的区域增加UDN应用。 目标2：注册和评估10名新的粗糙和服务不足的参与者。 这种行政补充是专注于服务不足的人口，包括未保险，保险不足， 农村，性别和性少数民族（LGBTQ+），阿拉斯加当地人，太平洋岛民血统和南亚。 满足这种需求，我们将利用华盛顿大学拥有的长期（几十年）网络 医疗中心（UWMC）和西雅图儿童医院（SCH）涵盖华盛顿，怀俄明州，阿拉斯加， 蒙大拿州和爱达荷州（第二次世界大战）。 UWMC和SC在WWAMI地区有很长的关系 包括医学生和该地区特定轨道的居民以及所有人的网络 这些国家将复杂的患者转移到我们的三级医疗中心。考虑到大土地和 相对较小的人口，该地区富含粗糙和服务不足的人群（部分是在东部 华盛顿，爱达荷州，怀俄明州和阿拉斯加。此外，阿拉斯加有很多阿拉斯加人和西方人 华盛顿有大量的人口，有性别和性少数群体（LGBTQ+），太平洋岛 和南亚血统。我们针对PNW UDN CS的集水区重叠了WWAMI地区 我们有现有的关系。因此，我们将能够从这些服务不足的 参与者（请参阅附带的支持信）。尽管不是第二次世界大战地区的一部分，但俄勒冈州也在 我们的集水区，我们与该地区的遗传学家有长期的关系，他们可以识别和参考 适当的参与者。