Pacific Northwest Undiagnosed Diseases Network Clinical Site

University Of Washington, Seattle WA

Investigators

Linked publications, trials & patents

Abstract

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.