The Pacific Northwest Undiagnosed Diseases Network Is Open for Applications
April 7, 2021
The Pacific Northwest Undiagnosed Diseases Network (PNW UDN) is currently open for applications for pediatric patients with medical conditions that have thus far eluded diagnosis. This National Institutes of Health (NIH)–funded study started in 2015 and has grown to a total of 12 clinical sites. The PNW clinical site, led by principal investigators Dr. Katrina Dipple and Dr. Gail Jarvik, is a collaborative effort between dozens of clinicians and researchers at Seattle Children’s and the University of Washington Medical Center.
Applications to the PNW UDN can be submitted online or by mail and may be initiated by a patient’s family or provider. Each application must include a provider’s referral letter with a summary of the patient’s medical history and prior diagnostic workup. The referring provider receives ongoing updates through application review and participation.
The PNW UDN team reviews the medical history and workup to date of all applicants for consideration of UDN enrollment or additional clinical tests to aid in the diagnostic search. Determination of acceptance and clinical recommendations are shared with the family and their referring provider, typically within six months of application. Enrolled study participants undergo extensive clinical and research-based testing, often including genomic-scale sequencing, metabolomics, and transcriptome analysis, in addition to a one- to five-day evaluation at Seattle Children’s with local specialists with the goal of reaching a diagnosis.
The PNW clinical site collaborates with the broader UDN network of experts and researchers, employing a team science approach for each case. There are currently no costs to the participant or family for these investigations.
To learn more and access the UDN application, please visit https://undiagnosed.hms.harvard.edu/.
You may contact the PNW UDN team directly at udnpnw@medicine.washington.edu or 206-616-2774. Information can also be found at https://clinicaltrials.gov/ct2/show/NCT02450851.