The 33rd Annual North American Cystic Fibrosis Conference

Oct 31, 2019 ‐ Nov 2, 2019


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W30--SW/PSYCH: Transition Programs - Implementation & Measuring Outcomes

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W30--SW/PSYCH: Transition Programs - Implementation & Measuring Outcomes

Nov 2, 2019 10:30am ‐ Nov 2, 2019 11:50am

Transition is a broad and complex topic within CF, including transitions between settings, to new care centers, and to new disease states. This session will focus on various transitions across the CF trajectory, encouraging the audience to consider the impact of transitions on the patient, family, and care team. The presenters will share unique examples of CF transition programs, discussing implementation and encouraging the audience to consider applicability to their own care centers.

Learning Objectives:

  • Describe different types of transitions for individuals with CF and their families across the lifespan. 
  • Discuss the psychosocial impact of various transitions on the patient, family, and care.
  • Evaluate strategies to create or improve transition procedures at individual care centers.

    Workshop Chair(s):
    • Kimberly Canter, Ph.D., Psychologist, Nemours/Alfred I. duPont Hospital for Children
    • Meg Hall, LCSW, Social Worker
    Workshop Speaker(s):

    W29--PT&RT: *Inhaled Medications & Airway Clearance Techniques: A Global Perspective

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    W29--PT&RT: *Inhaled Medications & Airway Clearance Techniques: A Global Perspective

    Nov 2, 2019 10:30am ‐ Nov 2, 2019 11:50am

    This session will look at current and evolving treatment practices within CF care around the globe with an emphasis on nebulizer therapy and airway clearance. The session presents the opportunity to explore varying practices, the opinions of people with CF and current international research in order to support and/or challenge current practice around nebulizer therapy and airway clearance. Improving knowledge of the theory and practicalities of treatment, of the links between exercise and airway clearance and of understanding and managing the challenges that these burdensome treatments present is essential to improving clinical outcomes and the quality of life of people with CF.

    Learning Objectives:

    • Describe the physiological properties of ACTs and debate how exercise influences airway clearance.
    • Discuss clinical reasoning around the practicalities of airway clearance techniques and nebulised therapies, for example choice of technique/medication and the order of administration.
    • Identify the challenges of sustaining adherence to long term therapy and gain insights into the opinions of people with CF, innovative research and practices in supporting adherence.

      Workshop Chair(s):
      • Matthew Dartt, B.S., R.T., Assistant Director of Respiratory Therapy, UCLA Medical Center, Santa Monica
      • Tracey Daniels, M.Sc., B.Sc., Advanced Clinical Specialist physiotherapist, York Teaching Hospital NHS Foundation Trust
      Workshop Speaker(s):
      • Maggie McIlwaine, Ph.D., Physical therapist, British Columbia Children's Hospital
      • Maria Martensson, B.Sc., Reg. physiotherapist
      • Nathan Ward, P.T., Principal Physiotherapist (Respiratory)
      • Martin Wildman, MRCP, M.Sc., Ph.D., Reader in Health Services Research, Birmingham Heartlands Hospital

      W28--NT: *Novel CF Treatments From Bench to Bedside

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      W28--NT: *Novel CF Treatments From Bench to Bedside

      Nov 2, 2019 10:30am ‐ Nov 2, 2019 11:50am

      As our knowledge for CFTR structure has improved, searches for mutation-specific as well as mutation-independent tactics have begun to emerge and open the path to ​revolutionizing our approach in treating CF patients. The presenters will share preclinical data for innovative therapeutic strategies, and describe new biomarkers useful in clinical trials, focusing on the infant cohort.

      Learning Objectives:

      • Discuss the potential development and therapeutic applications of 2 mutation independent strategies aiming to repair the CFTR gene (gene therapy) or the airway tissue (stem cell therapy).
      • Discuss the rationale for triple combination therapeutic regimens for F508Del-CFTR.
      • Assess knowledge into novel biomarkers for clinical trials in cystic fibrosis.

        Workshop Chair(s): Workshop Speaker(s):

        W27--INF/MIC: Microbial Ecology in CF

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        W27--INF/MIC: Microbial Ecology in CF

        Nov 2, 2019 10:30am ‐ Nov 2, 2019 11:50am

        The interplay between a CF patient's microbial communities and their health is complex. The first talk in this session will illustrate how the gut microbiome influences the rate of clinical exacerbations through changes in immune signaling. The next talk will describe how Pseudomonas aeruginosa undergoes adaptive evolution in the sinuses of CF patients, potentially seeding the lungs with pathoadapted strains. The last three talks will explore the microbial community structure and function in the CF lung -- first by coupling genomics and metabolomics to identify biomarkers of disease progression, then by exploring how targeting a specific metabolism of P. aeruginosa, nitrate respiration, can kill antibiotic-tolerant bacteria, and finally by demonstrating how the commonly used antibiotic tobramycin primarily targets non-dominant taxa in the CF lung.

        Learning Objectives:

        • Demonstrate that the activity of bacterial communities at multiple sites in the human body affect the health of CF patients.
        • Illustrate the utility of understanding the metabolic state of CF pathogens in order to identify biomarkers of disease progression and to develop novel treatments.
        • Assess the ecological impact of treatment with tobramycin.

          Workshop Chair(s): Workshop Speaker(s):

          W26--GMS-NT-ET: Animal Models in the Era of CFTR Modulators & Gene Editing

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          W26--GMS-NT-ET: Animal Models in the Era of CFTR Modulators & Gene Editing

          Nov 2, 2019 10:30am ‐ Nov 2, 2019 11:50am

          This workshop will discuss animal models in the era of CFTR modulators & gene editing.

          Learning Objectives:

          • Discuss the role of animal models in the era of effective small molecule therapies.
          • Describe the future research needs which can be met by new animal models.
          • Compare the utility of existing animal models.

            Workshop Chair(s): Workshop Speaker(s):

            W25--ET-NT: Addressing Unmet Needs for Nonsense & Rare Mutations

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            W25--ET-NT: Addressing Unmet Needs for Nonsense & Rare Mutations

            Nov 2, 2019 10:30am ‐ Nov 2, 2019 11:50am

            This workshop highlights advancements in new and emerging technologies progressing towards a cure. Discussions will include development of tools/strategies focused on rare and nonsense CFTR variants with translatable relevance to all CFTR mutations.

            Learning Objectives:

            • Summarize molecular defects attributable to CFTR premature truncation codons, including the role of nonsense mediated decay and its potential as a therapeutic target.
            • Compare approaches for CFTR gene repair or replacement in primary airway epithelia.
            • Evaluate state-of-the-art directed differentiation of airway progenitor cells from pluripotent source material.

            Note: Speaker Youngjin Kim's presentation was not recorded at his request.

              Workshop Chair(s): Workshop Speaker(s):

              W24--CLIN: Research in Gastroenterology & Hepatology

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              W24--CLIN: Research in Gastroenterology & Hepatology

              Nov 2, 2019 10:30am ‐ Nov 2, 2019 11:50am

              This session will be a combination of both clinical and basic science research that focuses on identifying either new treatments or therapeutic targets in the management of GI and hepatic manifestations of cystic fibrosis.

              Learning Objectives:

              • Identify a potential new treatment target in CF-associated constipation.
              • Discuss the use of organoids and '-omics' to better understand the impact of CFTR dysfunction on the intestinal environment.
              • Review the utility of imaging modalities to access GI and Hepatic disease in patients with CF.

              Note: Speakers Christabella Ng and Michael Coffey's presentations were not recorded at their request.

                Workshop Chair(s): Workshop Speaker(s):

                W23--CLIN: Current Issues in CF Pharmacotherapy

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                W23--CLIN: Current Issues in CF Pharmacotherapy

                Nov 2, 2019 10:30am ‐ Nov 2, 2019 11:50am

                This session will focus on various CF pharmacotherapy issues facing practitioners today. The topics that will discussed are the standardization and improvement in the rate of Pseudomonas aeruginosa eradication, collaborative efforts of an integrated healthcare system CF team on medication delivery, analysis of tobramycin serum concentration monitoring strategies (central vs peripheral line collections), the impact of the addition of a dedicated-CF pharmacy technician to an ambulatory CF clinic team, and the evaluation of the impact of pharmacist-driven interventions on medication adherence and outcomes on CFTR modulator therapy.

                Learning Objectives:

                • Describe the process involved to improve the rate of eradication of Pseudomonas aeruginosa.
                • Explain the impact of dedicated ambulatory CF pharmacy technicians and pharmacists on CF medication delivery, adherence, etc.
                • Discuss the difference in tobramycin serum concentration monitoring strategies between peripheral vein and central-line collections.

                  Workshop Chair(s): Workshop Speaker(s):

                  W22--CLIN: Epidemiology & Population-Based Research

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                  W22--CLIN: Epidemiology & Population-Based Research

                  Nov 2, 2019 10:30am ‐ Nov 2, 2019 11:50am

                  This session highlights the findings of recent innovative studies pertaining to the epidemiology of cystic fibrosis.

                  Learning Objectives:

                  • Identify determinants of lung function trends in children with CF, including those related to treatment and socioeconomic parameters.
                  • Appreciate challenges to providing high-quality CF care in resource-limited environments.
                  • Explain one or more relationships between CFTR modulator use and sweat chloride levels in people with CF.

                    Workshop Chair(s): Workshop Speaker(s):

                    W21--APP&D-CFTR: Airway Ions, Fluids & Mucus Transport

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                    W21--APP&D-CFTR: Airway Ions, Fluids & Mucus Transport

                    Nov 2, 2019 10:30am ‐ Nov 2, 2019 11:50am

                    To inform the development of innovative new therapies for CF lung disease, this workshop has three objectives. First, to assess the expression and function of CFTR in different populations of airway epithelial cells, including pulmonary ionocytes, rare cells that highly express the Cftr gene. Second, to appraise the role of CFTR-independent pathways for anion transport in mucociliary clearance, including SLC26A9. Third to discuss the organisation of mucus in bundles in normal airways and sheets in CF airways.

                    Learning Objectives:

                    • Evaluate the expression and function of CFTR in different types of airway epithelial cells.
                    •  Assess CFTR-independent mechanisms of mucociliary clearance.
                    • Review the organisation of mucus in normal and cystic fibrosis airways.

                    Note: Speaker Pamela Millar-Büchner's presentation was not recorded at her request.

                      Workshop Chair(s): Workshop Speaker(s):
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