Research

Seattle Children’s Research Institute adolescent medicine expert Dr. Rachel Katzenellenbogen.

Nearly all men and women in the United States are infected with human papillomavirus (HPV) during their lives, putting them at greater risk of developing life-threatening cervical, anal, vaginal, penile, throat and tongue cancers. But, what if it was possible to stop these cancers from developing?

The National Cancer Institute has awarded Seattle Children’s Research Institute adolescent medicine expert Dr. Rachel Katzenellenbogen more than $2 million to research that possibility. She is studying what happens in the body between the time of HPV infection and cancer development in search of opportunities to intervene and prevent malignant disease.

“There are generations of people who did not get the HPV vaccine or got vaccinated after they were already exposed to HPV,” Katzenellenbogen said. “Those people could still develop cancer. We need to understand their disease process if we are going to help them.” Read full post »

Kathia Vega Flores, 18, was diagnosed with lupus when she was 11 years old. She has had to take toxic medications to manage her disease.

Kathia Vega Flores will never forget the way her friends and family reacted when she came home from a month-long hospital stay at age 11: They did not recognize her.

Kathia had been diagnosed with lupus, a lifelong disease that causes inflammation throughout the body. The medications used to control her disease caused Kathia’s body to swell. She couldn’t walk without assistance. She was often dizzy and nauseous.  In total, Kathia was taking 20 pills each day.

“The medications changed me a lot,” she said. “It was very hard. I just wanted to get back to my normal routine of going to school and seeing my family without upsetting them.”

Lupus is most commonly diagnosed in teenage girls, but half of a million people in the United States are living with it. The disease can lead to rashes, fevers, enlarged lymph nodes, psychoses, seizures and inflammation of the heart, lungs or brain.

Roadblocks on the road to cures

Dr. Anne Stevens, a research expert at Seattle Children’s Research Institute, has been treating lupus patients at Seattle Children’s for 25 years. Despite the great advances experts like her have made studying the immune system, lupus is still treated with toxic medications like chemotherapy and steroids because of a lack of funding for pediatric research. Read full post »

Dr. Douglas Hawkins is the chair of the COG study

At the American Society of Clinical Oncology (ASCO) Annual Meeting, Children’s Oncology Group (COG) researchers presented promising findings from an international study that has identified a new therapy for treating rhabdomyosarcoma, a common childhood cancer. The therapy has fewer harsh side effects, meaning it lessens the chance of infections, need for blood transfusions and infertility later in life.

“Although we did not improve the cure rate, we are excited that we have identified a therapy that was as effective as standard treatment, but has fewer harmful side effects,” said Dr. Douglas Hawkins, chair of the COG study and associate division chief of Hematology/Oncology at Seattle Children’s Hospital. “Most children are cured of this cancer, and so we want to limit not only the side effects they experience during treatment, but also reduce the side effects that affect long-term health.”

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Baby Molly Hamilton.

Meet Molly

On Feb. 17, 2008, Erin and Bill Hamilton welcomed their daughter Molly into the world. She appeared to be a perfectly healthy, 9-pound baby girl, but a newborn screening test revealed Molly had cystic fibrosis.

“We were devastated,” Erin said. “We didn’t know anything about cystic fibrosis and had no idea how this disease would affect her life.”

Life-changing research

Cystic fibrosis is an inherited condition that affects about 30,000 people in the United States. It causes thick, sticky mucus to build in the lungs, digestive tract and other areas of the body. It’s also a disease that has become the life’s work of Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute.

In 1938, when cystic fibrosis was first recognized as a disease, babies with this condition rarely lived past one year. Thanks to researchers like Ramsey, children with this disease can now live comfortably into adulthood.

“It is so rewarding to see how research impacts the lives of these children,” Ramsey said. “My goal is to keep conducting research studies until there are successful treatments for all patients with cystic fibrosis.” Read full post »

According to a new study that will be highlighted this weekend at the Pediatric Academic Societies (PAS) annual meeting, women, particularly younger women, are still smoking while pregnant, putting their newborns at risk for congenital heart defects.

Patrick Sullivan, MD, lead author of the study and clinical fellow in pediatric cardiology at Seattle Children’s Hospital, said maternal smoking seemed to place newborns at a 50-70 percent greater risk for specific heart anomalies. The risk was highest in the heaviest smokers. Read full post »

Milton Wright III meets the lab technicians who engineered his T-cells and helped save his life.

Some moments are so significant the weight of them seems to hang in the air. I experienced this first-hand when cancer survivor Milton Wright III met the people who helped save his young life.

You may remember Wright, the leukemia patient who achieved remission thanks to an immunotherapy protocol designed by Mike Jensen, MD, at Seattle Children’s Research Institute.

Wright is doing well and recently had a chance to meet the scientist who designed his therapy, the technicians who modified his cells and the family whose foundation helped fund his treatment. Read full post »

“You study Facebook?”

Megan Moreno, MD, MPH, often hears a surprised response like this when she describes her work researching adolescent’s use of social media at Seattle Children’s Research Institute’s Center for Child Health, Behavior and Development. But, Moreno no longer has to tell people about her research – she can show it to them. Her team is participating in a video contest and hoping to take their work all the way to the National Institutes of Health (NIH).

Moreno leads the Social Media and Adolescent Health Research Team (SMAHRT) in its efforts to use social media to reduce health risk behaviors and promote positive lifestyles to adolescents. Read full post »

While many people with epilepsy live a full life, some die abruptly without warning or other clear medical cause due to a devastating phenomenon called sudden unexpected death in epilepsy (SUDEP). SUDEP is the most common cause of death in those with severe forms of epilepsy where seizures cannot be controlled with treatment, but what causes this tragic event remains unclear.

Franck Kalume, PhD, and other researchers at Seattle Children’s Research Institute are working to change this.

“Having a family member unexpectedly pass away from this – without any explantation as to why – is extremely devastating,” said Kalume, who lost his nephew to SUDEP. “Even though this condition has been around since the dawn of time, it is only in the recent decades that there’s been a substantial increased interest in SUDEP research and in raising awareness about its risk. I hope that we will be able to make a life changing impact by furthering our knowledge of the physiological mechanisms of SUDEP and finding ways to prevent it.”

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“Stop talking and start doing.”

The 10-year-old Virginia girl who spoke these words to lawmakers helped increase funding for pediatric research this year with the passing of a new law, and Seattle Children’s Research Institute is celebrating the news.

“Pediatrics gets a very small share of the National Institutes of Health budget, certainly not proportional to the number of children in the United States,” says Jim Hendricks, PhD, president of Seattle Children’s Research Institute. “Any dollars that make their way to pediatric research may help our patients and other children around the world.”

A little girl makes a difference

Fifth grader Gabriella Miller became a widely celebrated childhood cancer activist during her 11 month battle with brain cancer. In the weeks before her death on Oct. 26, she urged lawmakers to increase support of pediatric research.

“We need action,” she said during an interview for a cancer awareness documentary. Read full post »

Update: In January 2020, the New England Journal of Medicine published results from the completed PENUT (Preterm Epo Neuroprotection) Trial. The study found that erythropoietin (Epo) treatment administered to extremely preterm infants did not result in a lower risk of neurodevelopmental disabilities when tested at 2 years of age. Babies receiving Epo as part of the study required less transfusions in volume and number, resulting in a lower exposure to blood donors. Other research underway continues to study the use of Epo to treat term babies whose brains did not get enough oxygen at birth (asphyxia).

No soon-to-be parent ever wants to think they may meet their baby too soon, but this is unfortunately the reality for the parents of about 50,000 infants who are born premature in the U.S. each year. Premature babies often face a host of medical problems and also are at a higher risk for long-term neurodevelopmental disabilities. In fact, prematurity accounts for about 45 percent of kids with cerebral palsy, 35 percent of kids with vision impairment, and 25 percent of kids with mental or hearing impairment.

Seattle Children’s neonatologist Sandra Juul, MD, PhD, suspects a hormone called erythropoietin (Epo) holds the key to reducing the negative effects that premature birth can have on the brain, and she has launched a national, multi-center trial to test this theory.

In the randomized, placebo-controlled study, called the PENUT (Preterm Epo Neuroprotection) Trial, 940 extremely preterm infants (born between 24-28 weeks gestation) will be enrolled at 18 research centers and 29 hospitals across the nation. The University of Washington is the primary enrolling site in Washington, but eligible patients who are then transferred to Seattle Children’s Hospital will also be involved. The study is funded by the National Institute of Neurological Disorders and Stroke (NINDS).

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