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Workshop

W29--The Power of Data to Impact Patients, Policy, & Population.

Friday, September 27, 2024
10:15 AM – 12:15 PM ET
Location:205 A-C

Recorded Session

    Chair(s)

  • EM

    Edward McKone

    National Referral Center for Adult Cystic Fibrosis
    School of Medicine, University College Dublin, Ireland

  • Anna Faino, MSc (she/her/hers)

    Core for Biostatistics, Epidemiology and Analytics in Research
    Seattle Children's Research Institute

This workshop provides examples of ways in which large sources of data, whether they be national registries or observational studies, can be leveraged to study population-level response to HEMTs, mortality trends in countries without access to HEMTs, and new or emerging CF phenotypes of interest. Large-scale data can be used to validate clinical trial findings and can help propel improvements in patient-level CF care through policy and advocacy.

Learning Objectives:

  • Provide examples of study design and analysis techniques with large scale observational and registry-based datasets.
  • Demonstrate how large scale observational studies can support and expand on clinical trial findings.
  • Demonstrate how large datasets can be used to promote advocacy and policy changes.