Increasing Doctor–Researcher Collaboration to Improve Care for Kids

Research is a form of hope, and Seattle Children’s is on a quest to give every child the opportunity to benefit.

Havianna Hornish research

Havianna Hornish, 9, (with mom Suzanne Hornish) has been cancer-free for nearly two years, thanks to the cancer care team at Seattle Children’s. Because our doctors also conduct groundbreaking research, our patients have access to leading-edge therapies.

When Dr. Bob Sawin was training as a surgeon, one of his mentors was the late Dr. Joseph Murray – a Nobel prize–winning plastic surgeon whose curiosity about skin grafting eventually led him to perform the first successful kidney transplant.

“His interest in a clinical problem led to medical advances that vastly improved the lives of hundreds of thousands of people,” notes Sawin, who is now Seattle Children’s surgeon-in-chief. “The impact of his curiosity and the research it sparked still inspires me today.”

Integrating care and cure

The road to improved treatments usually starts with a medical question for which there isn’t yet a satisfying answer followed by efforts to find better ones. The cycle is often referred to as “bedside to bench to bedside.” 

“We have a great opportunity to bring our care and cure enterprises closer together for the benefit of our patients, and for children everywhere,” says Dean Allen, chair of Seattle Children's Research Institute Advisory Board. “We want the insights of our top-notch clinicians to influence and inspire the work of our incredible scientists – that’s the way we’ll deliver on Children’s mission to prevent, treat and eliminate pediatric disease.”

Accelerating advances

Soheil Meshinchi research

Dr. Soheil Meshinchi’s research dramatically upped the chance of survival from 10% to 90% for kids who relapse with an aggressive form of leukemia – fantastic results that are being tested nationally to see whether the investigational treatment should become standard care.

The outlook for children with cancer has improved dramatically in the last 50 years because pediatric oncologists across the country work together to develop new treatment approaches. It’s a model that provides patients with the opportunity to participate in research and benefit from the most current thinking on therapies.

That constant striving to improve was a lifesaver for Havianna Hornish of San Diego, who was visiting cousins in Bremerton, Washington, the summer she was 6. When her parents brought her to Children’s for what they thought was a sinus infection, she was diagnosed with a particularly aggressive type of blood cancer that had horrible odds for survival.

“We almost returned to San Diego for Havianna’s treatment,” recalls her mom Suzanne Hornish. “But when we discovered that doctors at Children’s were researching and treating the exact type of cancer Havianna had, we made a last-minute decision to stay in Seattle.”

Dr. Soheil Meshinchi is renowned for his research on acute myeloid leukemia (AML) with the specific gene mutation Havianna had. He had some compelling data that sorafenib (a medication used to treat kidney cancer) might work for her type of leukemia.

His hunch was right. “The result was fantastic. Kids who relapse with this type of cancer typically have a 10% chance of survival,” Meshinchi explains. “With sorafenib, we’re seeing survival rates of about 90%.”

Havianna was one of the first in the nation to receive sorafenib to treat AML; about 20 more kids have received it since. The results have been so overwhelmingly positive that Children’s started a national clinical research study last fall to test whether sorafenib should become part of the standard care for AML with this mutation.

“With sorafenib, we’re seeing survival rates of about 90%.”

Dr. Soheil Meshinchi

“Because of the care Havianna received she’s been cancer-free for nearly two years and she’s even back on the soccer field,” says her mom. “We owe it all to Seattle Children’s.”

A bold step

Logan Lewis research

Logan Lewis, 11, (with brother Peyton, 5) delivers holiday gifts to kids battling neuroblastoma – a tradition he started after winning his own fight with the disease. Logan’s eight-month treatment at Seattle Children’s was followed by five more months in a clinical trial to rid his body of any remaining cancer cells.

Children’s quest to bring care and cure closer together would replicate success stories like Havianna’s throughout the hospital. A five-year strategic planning initiative, led by Dr. Bonnie Ramsey and Sawin, is a bold step toward helping scientists integrate their research studies into the daily business of patient care – and giving families easy access to opt in or out of participating.

They envision a future where patients’ confidential medical records are connected to a secure database of all the open clinical research studies at Children’s – an electronic advancement that would identify patients who are eligible for specific studies.

When patients and their families check in for an appointment, they’d be invited to participate in an appropriate study or even asked if they would allow clinicians to save any blood or tissue samples for future studies. 

Families who opt in would be provided with information about the study while they wait for their appointment. If they have questions, a research associate would talk to them right away.

The power of participation

Samuel Olszta research

Samuel Olszta, 3, (with mom Gosia Olszta and Dr. Margaret Rosenfeld) stays healthy with cystic fibrosis treatments developed, in part, through clinical research at Seattle Children’s. The Olsztas view their participation in research as the path to their son’s future wellness.

When Pawel and Gosia Olszta kissed their newborn son, Samuel, they could taste salt – which they learned was a telltale sign of cystic fibrosis (CF).

As recently as the 1980s, children with CF lived to an average age of just 15. Today, because of clinical research done at Children’s and other centers across the country, the average life expectancy of people with CF is 40 – a great advance, but still not nearly good enough.

“We know the treatments that keep Samuel healthy today didn’t come out of the void,” says dad Pawel Olszta. “It’s all thanks to research and the participation of thousands of people.”

When Samuel was 2, the Olsztas jumped at the chance to enroll him in a clinical study to see if hypertonic saline – which helps reduce respiratory flare-ups in older patients with CF – was effective in children under 5. 

Though the study ultimately showed that hypertonic saline did not work for younger patients, the Olsztas remain committed to the research process and finding better cures.

“Research is a form of hope. Families expect us to challenge the status quo and develop new and better treatments; in fact, they demand it.”

Dr. Bonnie Ramsey

“Research is a form of hope,” reflects Ramsey, who helped develop an inhaled antibiotic that dramatically improves life for children with CF. “Families expect us to challenge the status quo and develop new and better treatments; in fact, they demand it. Being part of an institution that is committed to connecting research opportunities and clinical care is a giant magnet for families seeking the best possible care for their child.” 

Research brings hope

Katelyn Myhre research

Katelyn Mhyre, 4 (with dad Andrew Mhyre), was within three months of hospice care when an experimental medication suggested by Seattle Children’s Dr. Russ Saneto reduced her seizures from multiple times a day to only a few each month.

When Katelyn Mhyre was diagnosed with mitochondrial disease almost four years ago, Jennifer and Andrew Mhyre – who are both neuropharmacologists – had to reach for a textbook to learn how this relatively unknown disease prevents cells from making the energy their infant daughter needed to live and grow.

Katelyn was having seizures hundreds of times per day when the Mhyres met Dr. Russ Saneto, a pediatric neurologist nationally known for his research on mitochondrial disease. About a year ago, Saneto suggested Katelyn take EPI-743, a medication then only available as part of a compassionate use study for children within three months of hospice care.

“Before Katelyn started the medication, I wouldn’t even buy her clothes in the next size, because I didn’t know if she would need them,” recalls her mom. “Now Katelyn’s seizures have decreased and her general health has improved to the point that we can look ahead to a visit with my family in New York next year and feel confident that Katelyn will be with us. Our constant anxiety has been replaced with hope for the future, and for that we are incredibly grateful.”

You can support the research that starts in our own backyard and improves the lives of children around the world by becoming a research champion. For more information, or to tour Seattle Children’s Research Institute, visit our Research Champions page.

Published in Connection magazine, April 2013