Short Bowel Syndrome (SBS) Pediatric Research and Clinical Trials

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Contact the Short Bowel Program

Boston Children’s Hospital is home to the world’s most extensive research enterprise at a pediatric hospital. We also have many partnerships with research, biotech and health care organizations, and we work together to find innovative ways to improve kids’ health.

Care-changing treatments

In 2002, Boston Children’s physicians Heung Bae Kim, MD, surgical director of the Pediatric Transplant Center, and Tom Jaksic, MD, PhD, surgical director of the Center for Advanced Intestinal Rehabilitation, performed the first serial transverse enteroplasty (STEP) procedure. This is an innovative surgery that effectively lengthens the small intestine, allowing it to better absorb nutrients and flush out bacteria.

The STEP procedure is now being used worldwide, allowing some children to wean completely from IV nutrition and avoid the need for intestinal transplantation. In the spring of 2004, the STEP Data Registry was started to track outcomes of children who have had the STEP procedure, so that we can better understand its effectiveness compared to other bowel-lengthening procedures. Learn more about the STEP procedure.  

Smarter nutrition

Some children with intestinal failure can only receive nutrients intravenously (through an IV). But prolonged use of IV feedings often damages the liver, which can lead to liver failure and the need for a liver transplant.

Boston Children’s researchers Mark Puder, MD, Jenna Garza, MD, and Kathy Gura, PharmD, discovered that the then-standard formula included a fat mixture that made fat accumulate in the liver, which may contribute to liver disease. They discovered that switching from the old fat to Omegavan, a fat mixture made from fish oil, (which has been shown to prevent fat accumulation) resulted in a formula that’s far less damaging to the liver.

This discovery has caused a worldwide shift in treatment. Puder and colleagues are now conducting a formal clinical trial to learn how it can be used even more effectively.

Multidisciplinary care improves survival

In 1999, Boston Children's launched the Center for Advanced Intestinal Rehabilitation (CAIR) to provide coordinated, multidisciplinary care for children with short bowel syndrome (SBS). CAIR researchers compared 54 children with severe SBS managed by CAIR from 1999 to 2006, with 30 patients treated at Boston Children’s between 1986 and 1998. Survival was 89 percent in the CAIR group, compared with 70 percent in the controls. Notably, among patients who remained on parenteral nutrition, survival was 67 percent in the CAIR group versus 10 percent in the controls. 

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

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