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Guidelines and Standards of Care

Cystic Fibrosis Canada is aiming to expand the reach of clinical knowledge beyond our specialized CF Clinics, so that every Canadian living with cystic fibrosis receives the care they need, when they need it. Particularly given cystic fibrosis is a rare disease, it is important that there is a deep and ever evolving understanding that is also shared beyond CF clinics, in hospitals and other stops in the medical journey. With that goal in mind, we have worked with leading experts across the country to develop standards of care that will provide relevant information in a Canadian context, and can be referenced as needed by any healthcare provider.

These guidelines and standards of care will provide a comprehensive source of knowledge on the main disciplines and components of cystic fibrosis care.

Canadians with cystic fibrosis and their loved ones are able to mention these resources to their clinician, if they are receiving care outside of a specialized CF clinic, as a reference point if and when needed. 

Currently available Canadian guidelines, recommendations and standards of care:

Additional standards are currently in development, and will be added to this page as they become available. 

The development and publication of these materials has been made possible by the contributions of Cystic Fibrosis Canada’s Healthcare Advisory Council and other leading CF experts, as well as the generosity of our donors. 

For more information, please contact: info@cysticfibrosis.ca

DEVELOPING NATIONAL STANDARDS IN CANADA TO SUCCESSFULLY TRANSITION TRANSPLANT PATIENTS WITH CYSTIC FIBROSIS

As a joint initiative between Cystic Fibrosis Canada, Toronto Lung Transplant program, and St. Michael’s Hospital Toronto Adult Cystic Fibrosis Centre, we are Developing National Standards in Canada to Successfully Transition Transplant Patients with Cystic Fibrosis. Part of this initiative is to understand the current challenges and gaps in care as well as providing educational webinars for patients and care-givers. We are also planning workshops for healthcare professionals to be provided by healthcare providers in specialized areas who are knowledgeable about CF and transplant. We hope through providing more education and developing standardized protocols related to transplant and CF, we can help ensure patients are successfully transitioning throughout the entire transplant process and also develop a resourceful circle of care. 

(Click on the photo below to view a larger version of the poster presented in this photo)

Joanna Valsamis, Chief Healthcare, Research & Advocacy Officer, CF Canada, and Dr. Cecilia Chaparro, transplant physician at University Health Network – Toronto General Hospital presenting at the Vertex Circle of Care Colloquium at the 2017 North American CF Conference. Kate Gent (not pictured), nurse co-ordinator at St. Michael`s Hospital, Toronto, is also a collaborator on the grant.

Joanna Valsamis, Chief Healthcare, Research & Advocacy Officer, CF Canada, and Dr. Cecilia Chaparro, transplant physician at University Health Network – Toronto General Hospital presenting at the Vertex Circle of Care Colloquium at the 2017 North American CF Conference. Kate Gent (not pictured), nurse co-ordinator at St. Michael`s Hospital, Toronto, is also a collaborator on the grant.

Topic: Overview of Lung Transplant
Speaker(s): Dr. Cecillia Chaparro
Date of Presentation: November 30th, 2017, 8:30 a.m. EST
Recording:  View the recording here

Topic: Pharmacy Overview
Speaker(s): Daniel Cortes & June Wang
Date of Presentation: December 4th, 2017, 12:00 p.m. EST
Recording: View the recording here

Topic: Liver Disease
Speaker(s): Dr. Tanja Gonska
Date of Presentation: December 18th, 2017, 1:30 p.m EST
Recording:  View the recording here

Topic: Gastrointestinal (GI) and Nutrition
Speaker(s): Dr. Paul Pencharz & Brooke Stewart
Date of Presentation: December 18th, 2017, 2:30 p.m EST
Recording:  View the recording here

Topic: Physiotherapy & Exercise
Speaker(s): Kenneth Wu & Lisa Wickerson
Date of Presentation: January 31th, 2018, 9:00 a.m EST
Recording:  View the recording here

Topic: Mental Health
Speaker(s): 
Dr. Kien Dang
Date of Presentation: 
February 9th, 2018, 9:30 a.m EST
Recording: 
View the recording here

Topic: Relocation & Financial Considerations
Speaker(s): Annie Thomas-Diceman & Laura Middleton
Date of Presentation: February 9th, 2018, 3:30 p.m EST
Recording:  View the recording here

Topic: CF-related diabetes
Speaker(s): Kate Gent & Ronalee Robert
Date of Presentation: February 28th, 2018, 9 a.m EST
Recording:  View the recording here

Topic: Vaccines
Speaker(s): Kevin Curly
Date of Presentation: TBD
Recording:  TBD

Topic: Bone health
Speaker(s): Dr. Erin Norris
Date of Presentation:  TBD
Recording:  TBD

Topic: Sexual Health Issues
Speaker(s): Dr. Elizabeth Tullis
Date of Presentation:  TBD
Recording:  TBD

Topic: Paediatric Transplantation
Speaker(s): Dr. Melinda Solomon
Date of Presentation:  TBD
Recording: TBD

Topic: Infection Control Guidelines
Speaker(s): Dr. Shahid Husain
Date of Presentation:  TBD
Recording:  TBD

Topic: Preparing for a Transplant
Speaker(s): TBD
Date of Presentation: TBD
Recording: TBD

Topic: Financial Considerations & Relocation
Speaker(s): TBD
Date of Presentation: TBD
Recording: TBD

Topic: Psychosocial Challenges
Speaker(s): TBD
Date of Presentation: TBD
Recording: TBD

Topic: TBD
Speaker(s): TBD
Date of Presentation: TBD
Recording: TBD

Under development

Funding for this program was provided by Vertex Pharmaceutical’s Circle of Care Grants.


NOTICE

Certain PDF documents may not work with current assistive technologies because they use outdated technologies that do not support accessibility. Cystic Fibrosis Canada will convert documents to new formats upon request within 5 business days. Please contact info@cysticfibrosis.ca for support.