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Symposium

S29--It Starts with a Diagnosis, Best Practices for Newborn Screening

Saturday, September 28, 2024
10:15 AM – 12:15 PM ET
Location:253 A-C

Recorded Session

Cystic fibrosis newborn screening was implemented across the United States because early diagnosis of CF is associated with improved nutrition, pulmonary function, and life expectancy. While consensus guidelines recommend initial evaluation for CF by 4 weeks of age, about 1:3 infants with CF has their initial CF visit after that age. Furthermore, infants from minoritized demographic racial and ethnic groups are at higher risk for delayed initial visit and missed diagnosis. In this symposium, we discuss key strategies to improve timeliness and equity of CF diagnosis through improved public health practice, advocacy efforts, genetic counseling and testing, and through raising awareness and working with community partners.

Learning Objectives:

  • Summarize the purpose and key objectives of new guidelines that define best public health practice for CF newborn screening.
  • DIfferentiate the mandates of public health newborn screening practice from the autonomy of individuals when discussing preconception, prenatal, diagnostic, and family testing for disease-causing CFTR variants.
  • In your role as a clinician, researcher, quality improvement leader and/or advocate, employ new information to improve timely and equitable diagnosis of CF through public health, health care, education, and public policy actions.

Presentations:

  • 10:15 AM – 12:15 PM ET
    S29.1- Best Practice Guidelines for Newborn Screening Programs: Driving Towards Equity

    Speaker: Marci K. Sontag, PhD (she/her/hers) – Center for Public Health Innovation

  • 10:15 AM – 12:15 PM ET
    S29.2- Beyond the Statehouse: Advocacy to Improve CF Newborn Screening

    Community Speaker: Michele Wright

    Speaker: Tanicia Daley, MD, MPH – Emory University

    Speaker: Rachel Linnemann, MD (she/her/hers) – Department of Pediatrics, Division of Pulmonology, Asthma, Cystic Fibrosis, and Sleep, Emory University School of Medicine

  • 10:15 AM – 12:15 PM ET
    S29.3- Genetic Equity & Family Autonomy: Evolving Issues in Genetic Counseling for CF

    Speaker: Elinor Langfelder-Schwind, MS, LCGC (she/her/hers) – Lenox Hill Hospital/Northwell Health

  • 10:15 AM – 12:15 PM ET
    S29.4- Awareness, Education, & Community Engagement for CF Newborn Screening: The ACED-CF Project

    Speaker: Susanna A. McColley, MD, FAAP, ATSF (she/her/hers) – Northwestern University Feinberg School of Medicine