SupplementCystic Fibrosis Foundation Practice Guidelines for the Management of Infants with Cystic Fibrosis Transmembrane Conductance Regulator-Related Metabolic Syndrome during the First Two Years of Life and Beyond
Section snippets
Methods
The Delphi method was used prospectively and formally to determine consensus or lack thereof with the proposed recommendations.5 The CF Foundation charged a small working group with creating a general framework for monitoring and management of CRMS. Proposed care statements were circulated to a larger panel of 18 experts, which included representatives from the infant care guidelines group2 and the CF Center Directors in Massachusetts, a state with 5 CF care centers and 9 years of experience
Conclusion
When CF NBS identifies an infant with CRMS, a complex and potentially difficult situation is created for the family, CF specialist, and PCP. Care should be given to first, do no harm by creating a vulnerable child in the parents' eyes because many of these individuals will live a long and healthy life with a low risk for development of signs or symptoms of CF. However, because some will become symptomatic and preventive care is preferable to symptomatic care, these individuals should not be
Author Disclosures
Drucy Borowitz, MD, has served as a consultant for Solvay Pharmaceuticals. Stephanie D. Davis, MD, has served as a consultant for Inspire Pharmaceuticals. Frank J. Accurso, MD, has received funding from Digestive Care, Inc., Axcan Pharma, and Yasoo Health, Inc. The following authors declare no financial arrangement or affiliation with a corporate organization or a manufacturer of a product discussed in this supplement: Phil M. Farrell, MD, PhD, Bruce C. Marshall, MD, Richard B. Parad, MD, MPH,
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Please see Author Disclosures at the end of this article.