The identification of the CF gene has had several impacts, including neonatal screening and advising on the ramifications of a CF diagnosis. Cystic Fibrosis Foundation circulated a request for input on recommendations relating to genetic counseling. Here is the text of their announcement.
Topic: CF Genetic Counseling
Opportunity: Feedback Survey
From: Researchers at Johns Hopkins University, Brigham and Women’s Hospital, and Mount Sinai Beth Israel
A research team and expert workgroup of CF providers and parents are seeking feedback on a list of recommendations that aim to improve access to CF genetic counseling, with a focus on parents of infants who have had a positive CF newborn screening result. While they are specifically looking for parents of children with CF under age 10, all community feedback is appreciated.
These recommendations are a key deliverable of a CF Foundation funded screening improvement grant entitled, “Overcoming barriers to genetic counseling in cystic fibrosis care centers.” This project was reviewed by the Institutional Review Board at the Icahn School of Medicine at Mount Sinai.
The anonymous survey will take approximately 15 – 20 minutes to complete; longer if you would like to provide in-depth feedback on the larger white paper. The research team and working group will review and incorporate your critical input.
If you are interested in participating in this opportunity, please complete the survey by clicking on the button below by Thursday, January 21st at 11:59 p.m., ET. The survey includes links to a comprehensive draft white paper and an executive summary of the recommendations.
Elinor Langfelder-Schwind, M.S., C.G.C.
Mount Sinai Beth Israel
Karen S. Raraigh, M.G.C., C.G.C.
Johns Hopkins University
Richard B. Parad, M.D., M.P.H.
Brigham and Women’s Hospital