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Improving genetic health care: A Northern New England pilot project addressing the genetic evaluation of the child with developmental delays or intellectual disability

In 2006, all clinical genetics practices in Northern New England (Vermont, New Hampshire, and Maine) formed a learning collaborative with the purpose of improving genetic health care and outcomes. This article describes the current status of this effort. The methodology is based on our own modifications of the Institute of Healthcare Improvement “Breakthrough Series” and the Northern New England Cystic Fibrosis Consortium. Because of similarities across practices and the availability of existing published practice parameters, the clinical genetics evaluation of the child with developmental delay or intellectual disability was chosen as the topic to be studied. The aim was to improve the rate of etiological diagnosis of those with developmental delays referred to each genetics center by improving the processes of care. Process and outcomes were evaluated. Four of five sites also evaluated the impact of array comparative genomic hybridization (a‐CGH) laboratory testing of such patients. There was significant site‐to‐site variation in the rate of new diagnoses by a‐CGH with the average new diagnosis rate of 11.8% (range 5.4–28.8%). Barriers to implementation of the process and outcome data collection and analysis were significant and related to time pressures, lack of personnel or staff to support this activity, and competing quality improvement initiatives at the institutional home of some genetics centers. © 2009 Wiley‐Liss, Inc.