The CFW Resource Guide is an educational resource that is an overview of content of CFW Educational Conferences and Seminars. It is specially designed to meet the needs of developing countries and countries where there is little known about cystic fibrosis. Our main objective is to create a resource to encompass all the needs that surround supporting and managing cystic fibrosis effectively.

Each educational program is comprised of 6 to 8 educational tracks. The Resource Guide will contain the complete content of each educational track

1 or 2 thought leaders in the topic area will present evidence-based educational content through clinical presentations, workshop, case analysis, and question and answers sessions. European CF Society will provide opinion leaders on most topics.

The completed Resource Guide will be translated to Russian, Hindi, Arabic and Spanish to increase the spread of information.

Cystic Fibrosis Worldwide Educational Program and Resource Guide are designed as a single-topic, deep dive format that allows for complex case presentations, an opportunity to develop knowledge of an emerging disease state, special populations and co-morbidities surrounding a therapeutic area. The program also addresses the need to reach the patients and families directly improving home therapy and the capacity within patient organizations.

Target Audience

Clinicians involved in the management of patients with cystic fibrosis. Patients and family members who are coping with CF daily. Leaders of CF Associations supporting increased life expectancy and quality of life for CF patients.

Statement of Need

Clinicians have a variety of preferred learning styles. A publication containing concise, evidence-based material provides clinical updates to clinicians who prefer self-directed educational activities. Patients and families who live in countries where CF care is underdeveloped need access to information about CF. It is imperative that home therapy and the development of CF Associations to support patients be included in all educational guides and printed materials.

Goals and Objectives

• Narrow the gap between research and practice by learning the most current guidelines and evidence-based medicine.

• Enhance diagnostics and manage common problems with clinical pearls, examples, and case studies that are immediately applicable to practice.

• Compare patient care practices with those of colleagues and draw on the experiences of expert faculty to help improve patients quality of life, encourage their

• Adopting health-promoting behaviors, reduce hospitalization rates, and decrease morbidity rates.

• Increase knowledge of home therapy and patient/family responsibilities coping with CF.

• Increase capacity among CF member countries and patient organizations

Content Development Process

Cystic Fibrosis Worldwide CF Resource Guide content development is a multi-step process including:                                         

• An in-depth needs assessment and gap analysis that identifies therapeutic categories and topics for educational activities, setting the course development process into motion.
• Development of activity learning objectives upon which the activity will be based.
• Collaboration between Cystic Fibrosis Worldwide and the European CF Society with activity faculty to develop course content.
• A multi-level content review process involving Cystic Fibrosis Worldwide clinical advisory committee, the European CF Society, Cystic Fibrosis Worldwide member associations and Executive Board.
  Qualitative and quantitative evaluation data, provided by program participants, are compiled. These evaluation data are used to shape both future iterations of the activity as well as Cystic Fibrosis Worldwide global Needs Assessment. The feedback from the final evaluation is adopted into the guide content.
• All program evaluation data are also reviewed by Cystic Fibrosis Worldwide Medical Advisors as well as the Executive Board. The Board and Advisors are both charged with providing recommendations for and against future educational offerings in specified topic areas based upon their review of these data.

CFW will post the Pocket Guide here on the CFW website downloadable and free to the CF community. We will be sending out updates to all our web subscribers on this publication and other news. To be added to our mailing list (Click here)

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