W13--Epidemiology in Action: Insights from CF Registries & Beyond

Chair(s)

• 

  Stephanie Cheng, MSc.

  Canadian Cystic Fibrosis Registry
  Cystic Fibrosis Canada
• 

  Elizabeth Cromwell, PhD

  Patient Registry Research
  Cystic Fibrosis Foundation

This session will illustrate the breadth of registry-based research to enhance our understanding of CF care delivery and outcomes for people with CF. These topics include novel methods to estimate treatment effects, the use of CF registries to characterize comparison populations, quantify medication adherence, showcase linkage with other data sources, and investigate the changing nature of CF mortality.

Presentations:

• 10:15 AM - 12:15 PM PDT

  W13.1- Clinical characteristics and outcomes of people with cystic fibrosis with homozygous minimal function genotypes: Comparison to those with F508del/minimal function genotypes
  

  Speaker: Michael W. Konstan, MD – Case Western Reserve University
• 10:15 AM - 12:15 PM PDT

  W13.2- Hospitalizations during the first two years of life in infants and young children with cystic fibrosis.
  

  Speaker: Prabhjot Kaur Sekhon, MD – Columbia University Irving Medical Center
• 10:15 AM - 12:15 PM PDT

  W13.3- The changing nature of Canadian CF mortality in the post-modulator era.
  

  Speaker: Stephanie Y. Cheng, MSc. – Cystic Fibrosis Canada
• 10:15 AM - 12:15 PM PDT

  W13.4- Long term causal effects of ivacaftor on airway microbiology and lung function outcomes in people with cystic fibrosis: An emulation of target trials with the U.S. CF Foundation Patient Registry data
  

  Speaker: Ze Chen, n/a
• 10:15 AM - 12:15 PM PDT

  W13.5- Medication adherence to cystic fibrosis transmembrane conductance regulator (CFTR) modulators: Analysis on the French cystic fibrosis population from 2012-2020
  

  Speaker: Elia Eid, PharmD, PhD Student – Research on Healthcare Performance (RESHAPE), INSERM U1290, Université Claude Bernard Lyon 1