Metabolic Centers QI Work Group


The goal of this work group is to improve the health and health care of individuals with inherited metabolic conditions identified by newborn screening in New England.  Our first step towards this goal was to implement care processes for all new patients with PKU and MCAD as defined by the Expert Panel in all metabolic centers participating in a learning collaborative.  This established a clinical process improvement base from which to track the outcomes of children with PKU and MCAD receiving “optimal care” and to begin addressing additional metabolic conditions.


There are relatively few research studies that metabolic centers can draw upon. Information available in the literature fails to address the clinical process improvement strategies needed by clinical teams. Metabolic conditions are individually rare as are metabolic treatment centers. Consequently, pooling of information is required for more robust analyses of care process and health outcomes.  The metabolic centers in New England have come together in this Quality Improvement Learning Collaborative to achieve demonstrable results by the application of quality improvement methods.

Vitally important to the success of this collaborative is the concept of “spread,” the dissemination of innovation. This work group will devote substantial time, energy, and learning to establishing applicable strategies for other metabolic centers, and in conjunction with regional family advocacy groups successfully expand breakthroughs and improvement to other inherited metabolic disorders.


  • March 1, 2013 Work Group Webinar (notes pending)
  • May 11, 2012               Learning Collaborative      Webinar (alternative date) 
  • April 20, 2012              Learning Collaborative      Webinar
  • October 7, 2011           Learning Collaborative       Westford, MA (pending)
  • June 17, 2011               Learning Collaborative       Webinar  (pending)
  • April 29, 2011              Learning Collaborative       Westford, MA
  • March 11, 2011            Learning Collaborative       Webinar
  • February 4, 2011          Learning Collaborative       Waltham, MA
  • October 27, 2010          Planning Group                  Webinar  (pending)
  • June 16, 2010               Planning Group                  Webinar
  • May 21, 2010               Expert Panel                      Burlington, MA
  • May 5, 2010                 Planning Group                  Webinar
  • April 2, 2010                Planning Group                   Burlington, MA