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Led by the Cystic Fibrosis Trust’s CF Registry, the collaborative global study examines outcomes for people with cystic fibrosis who tested positive for COVID-19
TORONTO (November 9, 2020) - A new study recently published in the Journal of Cystic Fibrosis suggests that although the outcomes of COVID-19 in individuals living with cystic fibrosis (CF) were not as severe as originally feared, there is still a range of possible clinical outcomes following a diagnosis, and an indication that the novel coronavirus is not a benign virus for people with cystic fibrosis. This study included data from the Canadian CF Registry, developed and maintained by Cystic Fibrosis Canada.
This study is a follow-up to earlier study that examined the impact of the novel coronavirus on individuals living with cystic fibrosis, which indicated that individuals with cystic fibrosis did not appear to be impacted by COVID-19 at a higher rate than the general public. This most recent analysis of 181 people with cystic fibrosis who tested positive for SARS-CoV-2 (the infection that causes COVID-19) still suggests that globally, most people with cystic fibrosis who have contracted the virus recover from infection. However seven deaths and 11 admissions to intensive care units (ICU) were recorded among the cases in the study.
“It is reassuring to see that most people with cystic fibrosis do not experience a severe course of disease and are doing well following a COVID-19 diagnosis. However we urge everyone to remain vigilant and continue to follow the latest public health guidelines, practice infection control measures, and adhere to their CF treatments,” says Dr. Anne Stephenson, study author and Medical Director of the Canadian Cystic Fibrosis Registry. “As part of an ongoing effort to study the effects of COVID-19, we will continue to collect and analyze data on individuals with cystic fibrosis who contract the COVID-19 virus with a goal of understanding mid-to-long-term health outcomes for people living with cystic fibrosis.”
The study was a collaboration of the Cystic Fibrosis Registry Global Harmonization Group, and included case reports from 19 countries: Argentina, Australia, Belgium, Brazil, Canada, Chile, France, Germany, Ireland, Italy, Netherlands, New Zealand, Russia, South Africa, Spain, Sweden, Switzerland, UK, and USA.
Individuals in the study were also analyzed separately based on transplant status (149 non-transplanted and 32 post-transplant). The data indicated a significantly higher proportion of those post-transplant were hospitalized (74% vs. 46% of those who hadn’t had a transplant), and in the non-transplant group, a significantly higher proportion of those with lower lung function were hospitalized.
“Using available data from our CF registry here in Canada has allowed us to monitor trends, as well as coordinate with the international CF community when COVID-19 emerged, to analyze its impact on people living with cystic fibrosis,” says Stephanie Cheng, study author and Director of the Canadian Cystic Fibrosis Registry. “Providing relevant, timely and valuable insights for the CF community, in Canada and globally, will continue to be an important part of the work we do at Cystic Fibrosis Canada.”
About the study
The paper, The global impact of SARS-CoV-2 in 181 people with cystic fibrosis, includes case reports from nineteen countries: Argentina, Australia, Belgium, Brazil, Canada, Chile, France, Germany, Ireland, Italy, Netherlands, New Zealand, Russia, South Africa, Spain, Sweden, Switzerland, UK, and USA. The full manuscript is available online.
About cystic fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. There is no cure. Of the Canadians with cystic fibrosis who died in 2018, half were under the age of 33. Cystic fibrosis is a progressive, degenerative multi-system disease that affects mainly the lungs and digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus causes severe respiratory problems. Mucus and protein also build up in the digestive tract, making it difficult to digest and absorb nutrients from food. In addition to the physical effects of the disease, mental health concerns are emerging; anxiety and depression are common among this population. Double lung transplants are the final option for patients with end-stage disease; most fatalities of people with CF are due to lung disease.
About Cystic Fibrosis Canada
Cystic Fibrosis Canada has dramatically changed the cystic fibrosis story. We have advanced research and care that has more than doubled life expectancy. Since being founded by parents in 1960, Cystic Fibrosis Canada has grown into a leading organization with a central role engaging people living with cystic fibrosis, parents and caregivers, volunteers, researchers and healthcare professionals, government and donors. We work together to change lives through treatments, research, information and support. Despite our remarkable progress together, we are not yet done. Not when a child with cystic fibrosis still has only a 50% chance of living to 52. We will keep pushing, keep going further until all people with cystic fibrosis can and do experience everything life has to offer — and enjoy everything life has to offer. Learn more at www.cysticfibrosis.ca
For more information, please contact:
Kenya Francis, Associate, Corporate Communications
Cystic Fibrosis Canada