course is designed for new RCs and experienced RCs transitioning into cystic
fibrosis clinical trial research. It will provide a CF-specific overview of
clinical research at the site with experts in the field presenting material
from both regulatory and practical perspectives. Educational Objectives:
Interpret an overarching and
comprehensive perspective of research coordination.
Identify the key team members and what is
expected of the RC from each team member.
Discuss how does the RC meet each team
Kate A. Hilliard, B.A., CCRC, Director of Clinical Research Operations, Rainbow Babies & Children's Hospital
This short course, utilizing interactive discussion and case-based format, will provide in-depth reviews and recommendations regarding pharmacologic management of children and adults with CF. Highlights of the course include antibiotics for treatment of common CF pathogens in outpatient and inpatient settings, management of challenging and emerging pathogens, considerations in the use of chronic CF medications, and medications for pancreatic insufficiency and GI complications in CF.
Describe therapies aimed at treating pancreatic insufficiency and other GI complications in CF.
from the CF Foundation and European CF Society recommend systematic
prevention, identification, and treatment of depression and anxiety. This
course will teach practitioners what they need to know about using
psychological and psychopharmacological interventions in individuals with
Manage patient outcomes through the
dissemination and application of preventative strategies for anxiety and
Relate or enhance participant's clinical skill set and knowledge of Cognitive Behavioral Therapy (CBT).
Apply psychotherapy and pharmacotherapy interventions alone and in combination to develop treatment plans for individuals with CF and anxiety and/or depression.
training is intended to enhance patient-centered communication skills. It will discuss comprehensive assessment
of aspects of the patient that are relevant to successfully engaging a
patient in treatment including patient beliefs, skills, knowledge, etc. It will emphasize the
elicit-provide-elicit mode of patient education. The second half of the training will
involve a review of Motivational Interviewing and will provide in-session
practice of essential Motivational Interviewing skills and interventions.
Review methods to enhance patient-centered
specific techniques to improve communication and enhance motivation (e.g.
using the Elicit-Provide-Elicit approach, empathic listening, decisional
know what happens when we tell a strong-willed kid what to do: resistance,
rebellion, and resentment. Rather than coercion, help parents gain
cooperation with medication, food and more. The tools you learn will also
help you with patients in the clinical setting.
Explain the theoretical basis for
developmentally appropriate strategies that promote adherence to prescribed
Apply and teach
specific strengths-based, positive strategies for gaining cooperation with
opportunities to teach and discuss parenting skills with care givers in daily
This course will focus on advanced concepts in the nutritional management of individuals with cystic fibrosis, including the rapid growth years of infancy, early childhood, and adolescence, pregnancy, transplant, CF-related diabetes and impaired glucose tolerance, evaluation and treatment of poor growth through enteral and parental nutrition and appetite stimulation, optimization of digestion and absorption, and interpretation of lab values and treatment of subsequent nutritional deficiencies. Practical knowledge gained from this course will help improve the quality of nutrition care delivered to individuals with CF.
Summarize the nutritional challenges
related to infancy/childhood/adolescence, pregnancy, transplant, and
gastrointestinal health in individuals with CF.
Identify potential barriers and strategies
to improve growth in CF.
the management of CF-related diabetes and nutritional deficiencies.
Lisa Mannik, M.Sc., R.D., CDE, Registered Dietitian, St. Michael's Hospital
Erin Seffrood, M.S., R.D., C.S.P., C.D., Pediatric Clinical Nutritionist, American Family Children's Hospital
This course will offer a highly interactive introduction to the improvement fundamentals for members of the Virtual Improvement Program for Fundamentals. The CFF improvement fundamentals is based on the rich history of successful improvement & will be followed up by 8 months of web-based learning. Participants will receive pre-reading before this session.
Apply introduction to quality improvement through the VIP-F2 program.
Define your CF program, CF registry data, and 5P data to inform improvement.
Those who attend this course will understand the basic physiological responses to exercise in the major organ systems in both health and disease. This basic knowledge will form the foundational understanding that will allow appropriate implementation and interpretation of various exercise testing protocols. Attendees will then gain basic skills in performing and interpreting exercise tests and apply this knowledge in effective activity counseling that will lead to better health outcomes for patients with CF.
Explain the physiological basis for performing exercise tests.
Interpret exercise tests.
Formulate and implement activity recommendations based on exercise test results.
This session will focus on recent discoveries in the field of inflammation and host-pathogen response in cystic fibrosis. Researchers will present results from studies including several different types of leukocytes, effects of CFTR impairment and modulator drugs, and promising candidate biomarkers and therapeutics.
Examine the role of macrophage variability in the degree of regional airway damage within the CF lung.
Assess the impact of CFTR modulator drugs on leukocyte function.
Illustrate altered lymphocyte function in CF patients during acute pulmonary exacerbation of lung disease.
This session initially focuses on establishing a short coming of the recently approved small molecule modulators VX-809 and VX-770. These molecules fail to restore the defective membrane distribution of F508del-CFTR. Then, the session emphasizes the need for finding new approaches to find new and more effective therapies by targeting different aspects of CFTR trafficking and recycling. Finally, the session ends with showing that the mouse model is not effective in reflecting drug efficacy in human subjects.
Demonstrate the lack of effectiveness of VX-809 and VX-770 in the restoration of the defective membrane distribution of F508del-CFTR.
Create the need for the identification of new potential therapies targeting different aspects of mutant CFTR trafficking and internalization.
Create a difference in the response of mouse and human models to newly developed treatments when defining drug efficacy.