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Volunteer Advocate
cf insights cf insights

Cystic Fibrosis Canada launches MyCFLifePortal

Cystic Fibrosis Canada is thrilled to announce the launch of MyCFLifePortal.ca. Canadians living with cystic fibrosis will now have the opportunity to access their CF health data online – anytime they want with a MyCFLifePortal account.

Members of the CF Canada community and those living with CF may be familiar with the Canadian CF Registry (CCFR) – a collection of national CF clinical information on participating CF patients that is managed and maintained by CF Canada. The CCFR is an incredible resource that supports the CF community by advancing our knowledge and understanding of CF. It has been instrumental in many initiatives that include research studies to monitor important epidemiological trends, advocating for more funding and resources, responding to emerging healthcare issues and educating and promoting awareness about CF.

MyCFLifePortal is a secure, online read-only website specifically designed for participating CF patients and their caregivers and enable them to access their (or their child’s) CCFR data from the comfort of their own home. This website is fully bilingual and will include features such as interactive graphs and summary reports. MyCFLifePortal is provided free for any eligible user and participation is completely voluntary.

An example of interactive graphs available on MyCFLifePortal.

Prior to the launch of MyCFLifePortal, the CCFR was only accessible to healthcare professionals from the 42 CF clinics who manually enter in data. We have listened to the CF community who have asked to see their CCFR data. MyCFLifePortal will enable patients to take ownership of their healthcare and their health data and bridge the health information gap to transform patients into engaged partners with their CF healthcare team. Patients will be able to prepare for clinic visits through better knowledge of their current health status and how it has changed over time and watch their progress.

“Having access to the CF portal would mean having more control over my health. I have been too busy in the past to write down notes after clinic visits, but with this I’ll be able to access my own information whenever I want it. Being able to track my Pulmonary Function Test (PFTs) over time is something that I’ve always wanted to do, and now my chart will be at my fingertips.” – Chelsea Gagnon, Quebec.

 

 

How do I sign up?

Patients can register through their clinics. MyCFLifePortal has launched in three clinics: Royal Jubilee Hospital (Victoria, BC), Foothills Medical Centre (Calgary, AB); and St. Michael’s Hospital (Toronto, ON) and will be available at all 42 Canadian CF clinics by mid-2019. We will be announcing which CF clinics have enrolled so please stay tuned for more details! For more information, please visit the FAQ page. If you have any questions or comments, please contact CF Canada at cfregistry@cysticfibrosis.ca.

 

Stay tuned for more details!

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