For the third time in 2016, the work of Cystic Fibrosis Canada has been published in a peer reviewed academic journal. The article highlights an environmental scan of cystic fibrosis (CF) research around the world conducted in spring 2016 by Cystic Fibrosis Canada’s Janice Kelly, Manager, Healthcare. The purpose of the scan was to find out more about the research goals and funding process of CF charitable organizations in order to identify best practices, as well as gaps in the research.
CF charitable organizations exist in over 40 countries, and 15 of these fund research. CF charitable organizations that do not fund research focus on supporting individuals and families with CF directly, such as by providing access to equipment and medications.
Countries with CF charitable organizations that fund research and participated in the scan include Australia, Belgium, Canada, Denmark, France, Germany, Italy, the Netherlands, Sweden, Switzerland, the United Kingdom, and the United States. Representatives from each CF charitable organization were asked a series of questions about their research funding practices. Common themes identified included practicing an open call for research, peer review and patient engagement. A number of innovative approaches were also identified by various organizations.
The scan revealed that Cystic Fibrosis Canada’s research funding contributions at a level of $3.87 million (USD) – equal to $5.1 million (CDN) – are exceeded only by Cystic Fibrosis Foundation in the United States, who contribute $44 million (USD) in basic science research investments per year, and Cystic Fibrosis Trust in the United Kingdom, who contribute $4.9 million (USD).
Canada has the sixth highest CF population of any country in the world, yet Cystic Fibrosis Canada is the third highest funder of CF charitable-organizationally funded research. France, Germany and Italy each have larger CF populations than Canada, and their CF charitable organizations contribute $3.0 million (USD), $0.554 million (USD) and $2.5 million (USD) respectively.
To learn more and access the article, please click here.