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，奥德赛公司还没有解释他们的医疗状况。作为网络中的临床研究中心（CS）， 在第二阶段开始时，太平洋西北部（PNW）战斗系统审查、接受和评估参与者， 制定战略以结束诊断的艰难历程。这份要求的补充申请是一份资金申请， 原计划未开展的活动。总的目标是使更多得不到充分服务的人能够使用UDN 参与者 这些新目标是： 目标1：增加西北太平洋地区农村和服务不足地区的UDN申请。 目标2：招募和评估10名新的农村和服务不足的参与者。 这一行政补充措施的重点是服务不足的人口，包括没有保险、保险不足、 农村，性别和性少数群体（LGBTQ+），阿拉斯加原住民，太平洋岛民后裔和南亚人。 为了满足这一需求，我们将利用我们在华盛顿大学的长期（数十年）网络 医疗中心（UWMC）和西雅图儿童医院（SCH），覆盖华盛顿，怀俄明州，阿拉斯加， 蒙大拿州和爱达荷州（WWAMI）。UWMC和SCH在WWAMI地区有着长期的合作关系 包括医学生和居民在该地区的具体轨道，以及网络的供应商在所有 这些州把复杂的病人转到我们的三级医疗中心。由于陆地面积大， 人口相对较少，这一地区集中在农村和服务不足的人口中（特别是在东部地区）。 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本地人和西 华盛顿拥有大量的太平洋岛屿性别和性少数群体（LGBTQ+） 南亚血统。我们的PNW UDN CS集水区与WWAMI区域重叠， 我们有现有的关系。因此，我们将能够吸引这些服务不足的人提出申请， 参与者（见随附的支持信）。虽然不是WWAMI地区的一部分，但俄勒冈州也在 我们与该地区的遗传学家有着长期的关系，他们可以识别并参考 合适的参与者。