Quality Improvement Activities

This group continues build up its data registry for children referred to genetic clinics for developmental delays.  There are more than 2,000 patients entered, and a manuscript is in preparation to present results.

A data registry for children referred for metabolic conditions (PKU & MCAD) has been operational but on hold; that status is changing as we anticipate enough entries to aggregate meaningful data.

On September 29, 2016, ten members of the QI work group met at the beautifuly restored Hotel Portsmouth in Portsmouth, NH. 




In past years the work group established a focus for its work based on two groups of clinical genetics teams. One was focused on improving care in the general genetics clinics for those referred with global developmental delays or intellectual disability. A second group consisted of metabolic genetics teams focusing on improving care for patients with PKU and MCAD deficiency.  The two teams are listed on our Members & Partners page (click here for a more in-depth description).

Each genetics team designed health care processes (diagnostic and treatment) aimed ultimately to improve health care outcomes.    

Each team developed key measures to document care processes and outcomes. These patient-specific data are designed to measure quality of care and outcomes. With sufficient data, each genetics team can compare care by site and, moreover, serve to generate new ideas about changing care processes.

Development of the NEGC Quality Improvement Registry facilitated data collection and analysis for this quality improvement work. The legal framework for the QI Registry was established under the auspices of Business Associate Agreements of HIPAA with proper security and confidentiality protocols in place.

In 2012, the American Board of Medical Genetics agreed to recognize NEGC QI participation as meeting the requirements for Part IV of the Maintenance of Certificate program.