Research and Clinical Trials

Seattle Children’s doctors are leaders in outcomes research to improve care for kids across the nation. Dr. Adam Goldin chairs the Outcomes and Evidence-Based Practice Committee of the American Pediatric Surgical Association (APSA).The group identifies best practices and creates evidence-based guidelines to help surgeons improve care for their patients. As part of its work, the committee:

• Reviews current medical literature
• Summarizes findings from published research
• Surveys APSA members to record and measure how they treat patients with conditions that need surgery
• Presents evidence reviews at the APSA Annual Meeting

Seattle Children’s is improving how we treat children who need gastrostomy tubes. Issues with feeding tubes can be quite different for a child healing from bowel surgery than for a child with breathing trouble, swallowing problems or severe developmental delays.

Providers from many parts of the hospital worked together to decide how to best care for patients with feeding tubes. The group identified a feeding tube “home” for these patients. This includes a point person for each patient group so families know where to go for help. As a result, patient satisfaction is higher and we have reduced repeat procedures and visits to the Emergency Department. Dr. Adam Goldin, Seattle Children’s medical director for surgical outcomes, led this effort.

Our multidisciplinary research team is working to improve care for babies born with their bowels outside their body. This is called gastroschisis (gas-troh-SKEE-sis). The team includes experts in pediatric surgery, newborn care, radiology and maternal-fetal medicine from Seattle Children’s and the University of Washington. Our research projects include:

• Tracking results of procedures to understand the best approach in different situations
• Doing a cost analysis of the procedures
• Studying how ultrasound imaging during pregnancy predicts outcomes in babies born with gastroschisis

Dr. Kimberly Riehle is working to create new ways to treat and cure a deadly, rare form of liver cancer called fibrolamellar carcinoma (FLC). Right now, the only effective treatment for FLC is surgery, so the outlook is grim if cancer is advanced or comes back. Dr. Riehle’s research focuses on understanding how a single change in a gene (mutation) causes this cancer in children who are otherwise healthy. She works with researchers at the University of Washington and Fred Hutchinson Cancer Center. The team’s goal is to create targeted therapies for patients with this deadly cancer.

Seattle Children’s helped start a worldwide group that does research to improve care for children with colorectal and pelvic disorders. Dr. Jeffrey Avansino co-chairs the group, Pediatric Colorectal and Pelvic Learning Consortium (PCPLC). Part of that work is creating a national registry of patients with these disorders. We collect information on treatments and outcomes so we can improve care for patients across the country.

Dr. Caitlin Smith, co-director of Seattle Children’s Reconstructive Pelvic Medicine Program, also works with researchers at other medical centers to advance care for children and teens with pelvic conditions. Her main research focus is improving treatment and long-term management of children with cloaca (kloh-AY-kuh) and anorectal malformations.

Thanks to advances in medical, surgical and nutritional treatments, children with intestinal failure are living longer with better quality of life. Dr. Patrick Javid works to improve long-term outcomes for these children. Our research projects include:

• The option to take part in research studies of promising new treatments. These are called clinical trials. See Life-Changing Treatment for Boy With Intestinal Disease.
• A quality of life registry with centers around the world who care for kids with short bowel syndrome (SBS). This helps us improve treatment and quality of life for children with SBS.
• Finding the best doses of fats for babies after surgery for SBS.
• Working to avoid the need for bowel transplant and improve outcomes for children who do need one.
• Studying the most severe types of intestinal atresia, where the bowel does not form all the way before birth. This research by our Intestinal Rehabilitation Program aims to prevent problems like SBS.

• Dr. Gary Walco works closely with the U.S. Food and Drug Administration (FDA) and drug companies on better ways for clinical trials to measure how safe and effective pain medicines are for children. An important focus is creating models of postoperative pain in children, from newborns through teens. These models help show the usefulness of pain relief medicines in different age groups.