These doctors will participate in a Seattle clinic of the Undiagnosed Diseases Network. From left: Dr. Gail Jarvik, head of medical genetics at the University of Washington School of Medicine; Dr. Sirisak Chanprasert, assistant professor of medicine at UW; Dr. Katrina Dipple, head of genetic medicine at the UW Medicine Department of Pediatrics; Dr. Ian Glass, professor of pediatrics at UW, who practices at Seattle Children’s Hospital; and Dr. Fuki Hisama, professor of medicine at UW. (UW Medicine)

These doctors will participate in a Seattle clinic of the Undiagnosed Diseases Network. From left: Dr. Gail Jarvik, head of medical genetics at the University of Washington School of Medicine; Dr. Sirisak Chanprasert, assistant professor of medicine at UW; Dr. Katrina Dipple, head of genetic medicine at the UW Medicine Department of Pediatrics; Dr. Ian Glass, professor of pediatrics at UW, who practices at Seattle Children’s Hospital; and Dr. Fuki Hisama, professor of medicine at UW. (UW Medicine)

A new regional clinic aims to help diagnose rare disorders

A federal grant will fund a new regional clinic of the Undiagnosed Diseases Network in Seattle.

SEATTLE — It’s not the kind of journey you want to go on. It’s called a diagnostic odyssey and it can involve multiple doctors, multiple tests and, sometimes, no answers.

By the time Dr. Gail Jarvik, a genetic specialist at the University of Washington, sees a patient in the midst of a diagnostic odyssey, “they’ve visited five or six medical centers and had a lot of imaging done, had a lot of tests done, without a result,” said Jarvik, head of the Division of Medical Genetics at the UW School of Medicine.

Jarvik and her counterpart, Dr. Katrina Dipple, director of medical genetics at Seattle Children’s Hospital, hope a new partnership will help shorten that odyssey.

This fall, the UW School of Medicine and Children’s received a federal grant to establish a regional clinic with the aim of diagnosing rare and puzzling disorders.

Jarvik and Dipple have been selected to head the no-fee clinic. It will serve patients in Washington, Alaska, Montana, Idaho and Oregon.

The clinic is the first of its kind in the Pacific Northwest and will become part of the national Undiagnosed Diseases Network, a research program funded by the National Institutes of Health.

A four-year, $100 million NIH grant will fund five new clinics in Seattle, Utah, Missouri, Pennsylvania and Florida, and increase the network from seven to 12 sites.

Made up of research and medical centers, the program was created in 2015 by NIH to assist patients with difficult-to-classify diseases.

Since then, it has solved more than 200 cases, NIH said.

Patients must be referred by a doctor. Although they can apply themselves online, the application must include a doctor’s referral.

Those who qualify for the clinic’s services will have travel, lodging, meals and tests paid for.

“I would encourage families to apply, especially families in rural area,” Dipple said.

“Our goal is to give them a diagnosis and then help their local provider continue to take care of them,” Dipple said.

The clinic expects to see a minimum of 15 adults and 15 children each year.

“After that, it depends on how much it costs us,” Jarvik said.

The clinic’s approach isn’t new — “it’s similar to what people have been doing for patients with rare diseases for a long time,” Dipple said.

Becoming part of the network, however, “brings a lot of minds and resources onto the same problems,” Jarvik said.

Sometimes the culprit can be a known disorder that creates unusual symptoms in a patient, Jarvik said.

“Not everything looks like it looks in medical school,” Jarvik said.

It’s no coincidence that Jarvik and Dipple are both genetic specialists.

“It turns out that the underlying cause, when we can find it, is genetic in really most cases,” Jarvik said.

Even if the clinic can’t provide a definitive answer, “people feel like they’ve gotten the most comprehensive work-up possible,” Jarvik said.

Plus, it can also offer patients an introduction to a social support system — other families struggling with the same or similar medical issues, she said.

A diagnosis can not only offer relief to patients but families, as well.

For example, parents who have a child with an undiagnosed medical condition can wind up blaming themselves.

“They start to wonder, ‘Was it something I did, or something I ate while I was pregnant?’” Jarvik said.

“When they finally get a diagnosis … it’s just so powerful for them and us,” Dipple said.

The clinic expects to begin seeing patients early in 2019.

For more information or the apply go to undiagnosed.hms.harvard.edu/apply.

Janice Podsada; jpodsada@heraldnet.com; 425-339-3097; Twitter: JanicePods

Talk to us

More in Herald Business Journal

Small business relief effort inundated with 850 applications

The economy in and around Everett has struggled amid fallen revenues and uncertainty about the future.

Marysville drivers wait overnight for Chick-fil-A opening

The popular chicken restaurant began serving at 6:30 a.m. Thursday. Police plan to guide traffic for days.

Tulalip Resort Casino and Quil Ceda Creek to open Tuesday

Guests must wear a mask and occupancy is limited, the Tulalip Tribes announced Wednesday.

As Arlington gym closes, a Snohomish barber continues to cut

PA Fitness closed after the state attorney general filed a lawsuit. “We would lose,” a co-owner conceded.

‘Hundreds of millions’ in bogus jobless benefits paid out

Washington state has been reported as the top target of a Nigerian fraud ring.

FAA says it will let Boeing employees vouch for plane safety

The agency defended the current system but identified areas for improvement. Some lawmakers disagree.

Fraudsters using local identities for phony jobless claims

The Everett School District, for example, saw about 310 false claims using employees’ personal information.

State sues an Arlington gym for violating stay-home order

“It is my constitutional right to be open,” says a co-owner of PA Fitness. He plans to countersue.

Heavy traffic expected when Chick-fil-A opens in Marysville

The city warns there will likely be delays for days along 88th Street NE. near the new restaurant.

Somers announces $14 million in relief for small businesses

One program will target aerospace companies. The other will focus on service and retail industries.

Paine Field terminal to close for 71 days of ramp repairs

Alaska is down to one departure per day due to the coronavirus outbreak’s effect on travel.

Quarantini time! New state rule allows cocktails to-go

Enjoy a margarita or a Manhattan with lunch or dinner to go. At Buck’s in Everett, you keep the mason jar.