MyCFLifePortal is a secure new custom website designed for CF patients to get real-time access to their personal health data stored in the Canadian CF Registry. Data include lung function and nutritional measures, CF genetics, hospitalizations, medications, and many other health outcomes. CF patients will be able to examine, analyze and understand their own personal health data with interactive graphs and summary reports. They will be able to view their current health status and see how it has changed over time. MyCFLifePortal is currently read-only which means that you can view your personal health data but cannot change it. MyCFLifePortal is managed by Cystic Fibrosis Canada and is available for free to all CF patients who are currently participating in the Canadian CF Registry. Your personal health data will not be accessible to any other CF patient using MyCFLifePortal.
MyCFLifePortal is a read-only secure website that provides CF patients the ability to view all their personal patient-level data collected in the Canadian CF Registry. The Canadian CF Registry is the national source of health information on Canadian CF patients who have provided their consent in allowing their CF clinic to submit their data through a secure website. CF clinics are able to edit, monitor and analyze data for their entire CF clinic population (i.e. clinic-level).
By signing up for a MyCFLifePortal account, you will become familiar with your personal health data stored in the Canadian CF Registry and evaluate the new website designed specifically for you. Your feedback will be important to help us improve and make MyCFLifePortal a better tool for you. Participating in MyCFLifePortal is completely voluntary and available to you for free. You can sign up for a MyCFLifePortal account at any time by visiting your CF clinic.
Each individual user account will only have access to patient-level data that is linked to the user account which is assigned by your CF clinic. User-end security features such as two-factor authentication is required for all MyCFLifePortal user accounts. Maintaining the privacy and security of the Canadian CF Registry, including MyCFLifePortal, is a priority for Cystic Fibrosis Canada. Data are encrypted and physically stored securely in offsite hosting facilities in Canada with 24/7 monitoring surveillance.
Please ask your CF clinic about registering for a MyCFLifePortal user account. Your user account to MyCFLifePortal is completely free and your participation is completely voluntary. You can activate and deactivate your MyCFLifePortal account at any time. Access to MyCFLifePortal will depend on who you are in relation to the CF patient (i.e. the individual patient themselves or a caregiver of a CF child) as well as the age of the CF patient.
The number of user accounts will depend on the age of the CF patient for which a MyCFLifePortal user account is being created. If applicable, a user account can have access to multiple CF patients (e.g. a parent with a user account for two CF children).
There are several possible scenarios:
- If you have not provided consent to allow your CF clinic to enter your health information into the Canadian CF Registry (or a legal guardian has not provided consent on behalf of a CF child), there would be no existing patient record to link your user account
- If you have not reached the age of majority in the province where you attend your CF clinic
- If you are not the legal guardian of the CF child, then you are not permitted access to their data
The Canadian CF Registry is a comprehensive database that was started in the 1970s containing clinical data on Canadian CF patients spanning nearly five decades. It is the only source of national CF clinical information used to increase our understanding of the health of the CF population living in Canada. Canadian CF Registry data is used in support of research and clinical studies to improve patient care and ultimately, to find a cure for CF. This valuable resource would not be possible without the work and dedication of the CF clinics and the support of the CF community. Please see this short list of published studies that use or refer to Canadian CF Registry data:
- Corey, M., McLaughlin, F.J., Williams, M. & Levison, H.A comparison of survival, growth, and pulmonary function in patients with cystic fibrosis in Boston and Toronto.J.Clin.Epidemiol. 41, 583–91(1988).
- Durno, C.et al.Genotype and phenotype correlations in patients with cystic fibrosis and pancreatitis.Gastroenterology 123, 1857–1864(2002).
- Hodson, M.E.et al.An international / multicentre report on patients with cystic fibrosis(CF) over the age of 40 years.J.Cyst.Fibros. 7, 537–542(2008).
- Mak, D.Y.F., Sykes, J., Stephenson, A.L. & Lands, L.C.The benefits of newborn screening for cystic fibrosis: The Canadian experience.J.Cyst.Fibros. 15, 302–308(2016).
- Sykes, J.et al.A standardized approach to estimating survival statistics for population - based cystic fibrosis registry cohorts.J.Clin.Epidemiol. 70, 206–13(2016).
- Fink, A.K., Loeffler, D.R., Marshall, B.C., Goss, C.H. & Morgan, W.J.Data that empower: The success and promise of CF patient registries.Pediatr.Pulmonol. 52, S44–S51(2017).
- Goss, C.H.et al.Comparison of Nutrition and Lung Function Outcomes in Patients with Cystic Fibrosis Living in Canada and the United States.Am.J.Respir.Crit.Care Med. 197, 768–775(2018).
- Jackson, A.D. & Goss, C.H.Epidemiology of CF: How registries can be used to advance our understanding of the CF population.J.Cyst.Fibros. 17, 297–305(2018).
- Kim, S.- O., Corey, M., Stephenson, A.L. & Strug, L.J.Reference percentiles of FEV1 for the Canadian cystic fibrosis population: comparisons across time and countries.Thorax 73, 446–450(2018).
- Dasenbrook, E.C. & Sawicki, G.S.Cystic fibrosis patient registries: A valuable source for clinical research. J.Cyst.Fibros. 17, 433–440(2018).
Clinical information related to your CF care are collected including CF genetics, clinical measurements (lung function, height, weight), hospital records, microbiology results, treatments and medications.
Your consented data are submitted on your behalf by your CF clinic. The data are manually entered directly into the secure Canadian CF Registry.
On MyCFLifePortal, only you have access to your personal health data. The CF clinic(s) for which you have provided your consent will have access and can submit your personal health data into the Canadian CF Registry.
The data are used by the Canadian CF community to better understand the disease. Each year, Cystic Fibrosis Canada summarizes the Canadian CF Registry data in an annual data report which can be found on Cystic Fibrosis Canada’s website https://www.cysticfibrosis.ca/our-programs/cf-registry/reports-other-resources. In addition, the Canadian CF Registry data are used to investigate survival outcomes, monitor population trends, advocate for resources and funds, implement quality improvement initiatives, support clinical care, and many more important projects.
All activities related to the Canadian CF Registry are managed and maintained by the Registry team at Cystic Fibrosis Canada. This includes all data analyses, quality checks and other operations involving system changes, and updates.
Maintaining the privacy and security of the Canadian CF Registry, including MyCFLifePortal, is a priority for Cystic Fibrosis Canada. Data are encrypted and physically stored securely in offsite hosting facilities in Canada with 24/7 monitoring surveillance.
If you have any questions regarding your involvement with the Canadian CF Registry, please consult with your healthcare team at your CF clinic. If you have questions or comments regarding the Canadian CF Registry or MyCFLifePortal, please contact firstname.lastname@example.org.