31st Annual North American Cystic Fibrosis Conference

Nov 2, 2017 ‐ Nov 4, 2017


The North American Cystic Fibrosis Conference (NACFC) provides a collaborative and educational forum for CF professionals to help advance CF research and care. This annual meeting brings together scientists, clinicians, and caregivers from around the world to discuss and share ideas on the latest advances in CF research, care, and drug development and to exchange ideas about ways to improve the health and quality of life for people with CF.


Sessions

W07: NRS-NTR: Collaborative Approach to Palliative Care: The Journey

Nov 2, 2017 9:45am ‐ Nov 2, 2017 11:05am

Identification: W07

As life expectancy increases among Cystic Fibrosis (CF) patients, it's clear that Palliative Care is becoming an important aspect in the management of patients. Complexities of the disease require a multidisciplinary approach so that comprehensive quality care can be experienced by these patients. Attendees of this session can expect to see presentations and discussions aspects of palliative care, including pain, mental health, nutrition and lung transplantation.

Learning Objectives:

  1. Describe new interventions to help improve outcomes in palliative care and transplant, including screening, planning and clinical interventions.
  2. Identify measures other than objective testing that might be used in when assessing the need for palliative care.
  3. Summarize of the impact of nutrition in Palliative Care.

Workshop Chair(s): Workshop Speaker(s): Disclosures
  • Deborah Friedman, Ph.D.:

    Deborah Friedman:

    Cystic Fibrosis Foundation and Cystic Fibrosis Foundation Therapeutics

    • Mental Health Coordinator Award
    • Grant Support

    Vertex Pharmaceuticals, Inc.

    • Charitable Grant Award

W09: PT&RT: Current Exercise Research in CF

Nov 2, 2017 9:45am ‐ Nov 2, 2017 11:05am

Identification: W09

Exercise intolerance is a common phenotype observed in patients with CF. In fact, exercise intolerance has not only been shown to predict mortality, it also increases the risk of hospitalizations and is associated with more pulmonary infections. Accordingly, better understanding of physical activity and exercise capacity in patients with CF is essential to improve the quality of life in these patients.

Learning Objectives:

  1. Define the importance of exercise capacity in patients with CF.
  2. Describe how to improve exercise capacity in CF.
  3. Discuss the impact that treatment has on exercise capacity in CF.

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

W10: SW/PSYCH: Transition: Beyond the Patient

Nov 2, 2017 9:45am ‐ Nov 2, 2017 11:05am

Identification: W10

This workshop will provide information about the transition from pediatric to adult care for individuals with CF, using a systems-level approach to consider the multiple factors that impact the patient, family, and care team during transition. Challenges that impact the transition process will be discussed, and programs utilizing successful transition models will be highlighted.

Learning Objectives:

  1. Identify common challenges faced by families when a child transitions from pediatric to adult care.
  2. Describe strategies which may help facilitate smoother transitions.
  3. Discuss the benefits of a systems-level conceptualization of transition from pediatric to adult care.

Workshop Chair(s):
  • Kimberly Canter, Ph.D., Nemours/Alfred I. duPont Hospital for Children
  • Kathryn Cooney, LICSW, M.S.W., Hasbro Children`s Hospital/Rhode Island Hospital
Workshop Speaker(s):

W11: APP&D: Innate Defense Defects in the CF Lung

Nov 3, 2017 2:00pm ‐ Nov 3, 2017 3:20pm

Identification: W11

Innate immune defects contribute significantly to the pathogenesis of Cystic Fibrosis. In this session we will explore the roles of mucus in host defense and how these functions may be defective in CF.

Learning Objectives:

  1. Assess how ion transport and cellular signaling impacts mucus structure and function.
  2. Examine immune cell regulation of mucus properties in the CF airway.
  3. Describe new imaging techniques being used to study mucus rheology.

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

W12: CFTR: Toward a One Time Cure: Technologies & Editing

Nov 3, 2017 2:00pm ‐ Nov 3, 2017 3:20pm

Identification: W12

This session will highlight new technologies and gene editing strategies that will move the field towards a one time cure.

Learning Objectives:

  1. Describe the potential power of CRISPR CAS9 based gene editing platforms for drug development and a one time cure
  2. Discuss the advantages of engineered tRNA for suppression of CFTR nonsense mutations
  3. Test the efficiency of oligonucleotide mediated therapy to restore CFTR function

Note: Speaker Adele Ricciardi's presentation was not recorded at their request.

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

W13: CLIN: Pulmonary AbstractsW13: CLIN: Pulmonary Abstracts

Preview Available

W13: CLIN: Pulmonary Abstracts

Nov 3, 2017 2:00pm ‐ Nov 3, 2017 3:20pm

Identification: W13

This workshop will provide attendees with an overview of various factors that may affect pulmonary outcomes in CF. Topics will include the CF microbiome, effects of azithromycin, pulmonary exacerbations and real world experience with CFTR modulators. The session will include information applicable to both pediatric and adult CF care.

Learning Objectives:

  1. Analyze important respiratory health issues related to the microbiome.
  2. Review benefits and risks of azithromycin use in CF.
  3. Summarize the consequences of lack of recovery from pulmonary exacerbations and new data on effectiveness of lumacaftor/ivacaftor.

Workshop Chair(s):
  • Raksha Jain, M.D., M.Sc., Associate Professor
  • Thomas Lahiri, M.D., Director, Pediatric Pulmonology, University of Vermont Children's Hospital
Workshop Speaker(s):

W14: GMS: Genes & Environment: The Effects of Nature vs. Nurture

Nov 3, 2017 2:00pm ‐ Nov 3, 2017 3:20pm

Identification: W14

Cystic Fibrosis disease presentation and progression vary widely across people living with CF, with CFTR mutations only partially accounting for overall phenotype. This workshop session will provide an update on international studies of genetic and environmental modifiers of CF lung disease. New approaches for discovering genetic modifiers, and novel targets for modification of CF lung disease will be discussed.

Learning Objectives:

  1. Describe genes and environmental mechanisms thought to be important to CF lung disease.
  2. Relate non-CFTR genetic modifiers to the pathogenesis of CF lung disease and additional pulmonary diseases.
  3. Compare and contrast research strategies used to discover novel modifier genes with techniques used to study underlying mechanisms of identified modifier genes.

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

W15: INF/MIC: Epidemiology & Management of Infection

Nov 3, 2017 2:00pm ‐ Nov 3, 2017 3:20pm

Identification: W15

In these sessions, the epidemiology and clinical associations of important pathogens in cystic fibrosis will be presented. Speakers will present evidence on pathogen evolution over time, novel scoring systems for defining chronicity, and the impact of emerging therapies on the effectiveness of existing antimicrobials.

Learning Objectives:

  1. Describe the epidemiology, clonal spread, and resulting clinical associations of common CF pathogens.
  2. Propose a novel scoring system for chronic Pseudomonas aeruginosa infection in cystic fibrosis.
  3. Discuss the impact of novel small molecule therapies on antimicrobial effectiveness for traditional cystic fibrosis pathogens.

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

W16: NRS: Innovations in Sustaining Daily Care: A Better Partnership

Nov 3, 2017 2:00pm ‐ Nov 3, 2017 3:20pm

Identification: W16

During this workshop, we will present innovative partnerships occurring with CF care teams, families, and adults with CF. This session will focus on strategies implemented in Care Centers to create or enhance partnerships in the delivery of care.

Learning Objectives:

  1. Describe the utility of personal health monitoring as a method for patient engagement and self care management.
  2. Discuss care partnerships through the use of Pre Visit Planning.
  3. Discuss the role of co-production in implementing a behavioral health screening program.

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

W17: NTR: Nutrition ResearchW17: NTR: Nutrition Research

Preview Available

W17: NTR: Nutrition Research

Nov 3, 2017 2:00pm ‐ Nov 3, 2017 3:20pm

Identification: W17

This workshop will provide presentations submitted as abstracts for nutrition/GI related research. The latest research developments in the Feeding Infants Right from the Start (FIRST) study describe infant and toddler growth as well as clinical interventions of gastrostomy and appetite stimulant use. Also, cystic fibrosis related liver disease will be explored with an evaluation of tests available to screen for and assess the status of liver disease. Finally, results of studies looking at changes in adults, in body composition or nutritional status, after a course on ivacaftor or ivacaftor/lumacaftor will be presented.

Learning Objectives:

  1. Describe findings of the Feeding Infants Right from the Start (FIRST) study.
  2. Discuss and compare methods used to evaluate cystic fibrosis related liver disease.
  3. Summarize and interpret change in body composition and nutritional status after treatment with ivacaftor or ivacaftor/lumacaftor.

Workshop Chair(s):
  • Gretchen M. Garlow, M.S., R.D., Senior Clinical Nutritionist, Massachusetts General Hospital
  • Tami J. Miller, R.D., C.S.P., C.D., Clinical Dietitian Specialist/Research Coordinator, Children's Hospital of Wisconsin
Workshop Speaker(s):
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