The Cleft and Craniofacial Center has partnered with the International Consortium for Health Outcomes Measurement (ICHOM), a non-profit dedicated to measuring health outcomes that matter most to patients.

Collaborating with several of the world’s leading cleft centers, the goal is to develop a set of quality of care and quality of life measurements for those born with a cleft lip and/or palate.

This year, we made significant progress with ICHOM’s focus to bring together diverse stakeholders to develop a minimum “Standard Set” of outcomes that can be adopted globally and provide a benchmark to compare performance among institutions. The multidisciplinary group at Boston Children’s Hospital is one of the first American institutions collecting and reporting these metrics. Our goal is to constantly improve cleft care here in the U.S. and abroad, and we are excited to be on the forefront of this endeavor!

10 organizations in 8 different countries participate in this endeavor!

A designated ICHOM patient is followed from baseline through to the end of treatment. There are 7 measurement points throughout an episode of care, which involves over 25 clinicians and 2 care sites (Boston and Waltham).