A NEW PARTNERSHIP TO FUND OMICS RESEARCH ON CYSTIC FIBROSIS
Montréal, May 3, 2024 – It is with great pleasure that Génome Québec and Cystic Fibrosis Canada join forces to create a new funding program to support omics research on cystic fibrosis. With the aim of accelerating therapeutic innovation for the treatment of this rare disease, this program will also be aligned with the objectives and orientations of the federal and provincial heath and innovation strategies.
Cystic fibrosis exhibits a notably higher prevalence among the French-Canadian population in the Saguenay-Lac St. Jean region of northeastern Quebec. In fact, the average incidence of cystic fibrosis carriers in this region is estimated to be 1 in 15 persons, compared to the national average of 1 in 30 persons. Novel therapeutic agents aim to restore the proper function of cystic fibrosis transmembrane conductance regulator (CFTR) protein, providing significant benefits to numerous patients. However, over 10% of mutations fail to produce functional CFTR proteins, rendering these new treatments ineffective. This is notably true for several mutations that are rare globally, but comparatively prevalent in Quebec. To address this scientific challenge, Génome Québec and Cystic Fibrosis Canada will launch a new funding program to support research on these mutations with the long-term goal of developing novel therapies.
This partnership will mobilize the Quebec research community, while ensuring that the needs of the Cystic Fibrosis community are taken into account. This alliance will thus contribute to the democratization of research while increasing public awareness.
This program will only be open to Québec researchers and is expected to be launched (RFA publication) by the beginning of June 2024. The application process will include two steps: a registration, followed by a full application. The total envelope foreseen for this program is $1.2 million which will be used to fund selected projects over the term of three years. Teams will not be required to secure additional co-funding.
“Genomics has great potential in the context of developing new therapies, and therefore changing the life of thousands of patients and their families. Discoveries resulting from omics research can help identify more promising targets for new drugs, speed up the treatment of people with the right therapy and reduce research and development costs. We look forward to this partnership opportunity with great optimism.”
- Stéphanie Lord-Fontaine, Vice President, Scientific Affairs at Génome Québec
“Through our new research strategy, MOMENTUM, Cystic Fibrosis Canada is focused on supporting research with nearer term impact that addresses the priority needs of our community while working in partnership to take us further. There is an urgent need to support research for CF patients with mutations that won’t respond to current therapies, many of which are much more common in Quebec. This new collaboration and funding opportunity with Génome Québec is an excellent example of how we are moving strategically to make a larger difference in the CF community. We look forward to working together to advance this important work and bring solutions to this community sooner. - Paul Eckford, Chief Scientific Officer, Cystic Fibrosis Canada
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 the past five years, half were under the age of 38. 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 cystic fibrosis are due to lung disease.
About Cystic Fibrosis Canada
Cystic Fibrosis Canada has dramatically changed the cystic fibrosis story, advancing 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, all working together to change lives through treatments, research, information, support and connection. Cystic Fibrosis Canada has launched a clinical trials network and today 100 per cent of our population can be referred to a trial - bringing new and improved treatments to our community. Cystic Fibrosis Canada has also set the standard for advocacy work, driving changes to the healthcare system to enable approval and funding for the life-changing medicine, Trikafta, at record speed. Because of this work, children born with the disease today will have a much different, more positive path than even a decade ago. While we celebrate that progress and are proud of the treatment options Cystic Fibrosis Canada helped bring to this country, we still have much work to do. Trikafta is not a cure. People are still very sick from this disease and far too many are dying far too young. We applaud this life-changing treatment, yet it means very little if not everyone can benefit from it. And for those who may never benefit from it, we need new solutions. We still have much work to do to ensure healthy, full lives for everyone.
About Génome Québec
Génome Québec’s mission is to catalyze the development and excellence of genomics research and promote its integration and democratization. It is a pillar of the Québec bioeconomy and contributes to Québec’s influence and its social and sustainable development. The funds invested by Génome Québec are provided by the Ministère de l'Économie, de l'Innovation et de l’Énergie du Québec (MEIE), the Government of Canada, through Genome Canada, and private partners. To learn more, visit www.genomequebec.com.
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Contacts
Dr. Annina Spilker
Manager of programs and strategic initiatives, Scientific Affairs
Génome Québec
aspilker@genomequebec.com
Dr. Rachel Syme
Program Director, Research
Cystic Fibrosis Canada
rsyme@cysticfibrosis.ca
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