Dr. Stanojevic is a respiratory epidemiologist who wants to better understandhow the CF population changes over time and how we can keep people healthier for longer. She was recently funded by Cystic Fibrosis Canada for her study Beyond the numbers: understanding disparities in the under-represented Canadian Cystic Fibrosis population, with an Early Career Investigator Award. Cystic Fibrosis Canada partnered with Research Nova Scotia to fund this project Learn more about her contribution to CF research below.
Can you provide a brief overview of your research?
Traditionally, CF has been considered as a disease that affects people of white European descent. It is now better understood that CF can affect people of all ancestries and ethnicities. In the United States researchers have found that there are systematic biases in care and clinical outcomes for people who are not white. Because CF is perceived as a disease that affects white people, people of other ancestries and ethnic groups get diagnosed later, and do not live as long. The most common CF variant, dF508, is also more common in people of European ancestry. We do not have a clear understanding of how CF affects people who have any of the other non-dF508 mutations. In Canada, although we collect information about ethnicity, we have never examined whether outcomes are different in people with CF who are not of white European ancestry.
In parallel, my team is currently working with CF Canada to understand the socio-economic ‘Burden of CF’. Many Canadians with CF completed our survey which helped us to understand what it really means to live with CF. We also learned that a lot happens outside the hospital walls, and these stories remain largely untold. These stories highlight the need to better understand how the social determinants of health shape individuals’ health journeys, impacting response to treatments and overall well-being.
And that is what this grant is all about. We are trying to better understand people with CF that have been under-represented in research. These individuals have unique genes, diverse backgrounds, and different social circumstances and their voices have been excluded from research. The findings will help to ultimately shape more inclusive and effective approaches to CF care.
Are there any specific methods or approaches that you want to discuss?
CF Canada provides the most amazing resource to the research community – the Canadian Cystic Fibrosis Registry – which has provided researchers with important insights into the CF population. We will use registry data to understand how diagnosis, treatments and clinical outcomes differ between people of different ethnicities. We will also use short-surveys, and participatory-based research, including interviews and focus group, to fill in gaps where the registry doesn’t currently have data. Our work will inform CF Canada about the kinds of information and data that could be collected to ensure our research is more inclusive and representative in the future.
What inspired you to pursue research in CF and more specifically, what inspired you to pursue this specific project?
In high school, I had the privilege of volunteering with Johanna Rommens, a CF researcher who has made many important contributions to our understanding of CF genetics. She was a wonderful mentor and sparked my interest research. Over the course of my career, I kept bumping into cystic fibrosis and had many opportunities to better understand how CF affects the growth and development of the lungs in children. As I learned more about this disease and how it affects people, I kept wanting to do more to help fill in the gaps in knowledge in the hopes that more information would help to reduce the burden of this horrific disease.
In terms of this particular project, I have been investigating how some of the ways in which we use measurements of lung function to make decisions about treatments, may systematically make people of non-European ancestry look healthier than they are. Researchers have believed for a long time that we were being more equitable, when in fact we may have been doing harm. Measurements of lung function are one of the most important tools we have to monitor how CF lung disease progresses, and I wanted to better understand whether we were also making under-represented people with CF look healthier.
Congratulations on receiving an early career investigator award. How significant do you feel it is for CF Canada to fund early-career researchers like yourself?
I am very grateful for CF Canada. After working with the CF research team in Toronto for many years, I started my own research program in 2020. It is encouraging to know that the community supports me to be an independent researchers, and that my ideas are recognized as important to the research community and to people affected by this disease. I am excited to have the opportunity to mentor a team of young researchers who might also go on to be CF researchers themselves.
What significance will this project have to both the research community and those living with cystic fibrosis?
Our results will help to raise awareness that CF is not a disease that only affects people of white European ancestry. I hope that our research brings a voice to the underrepresented community and demonstrates how CF may affect everyone differently. More importantly, if we can identify ways to make diagnosis, care and outcomes more equitable, it will help to ensure that all Canadians with CF have the same opportunities to live long and healthy lives.
In terms of the research community, I anticipate our research will inform how we can collect and analyze data in more inclusive ways. By collecting more representative data and understanding what happens outside of the clinic, we can be more holistic about how we think about the disease and the people who are affected by it.
How has CF Canada’s Elevate program been beneficial to you and your work?
I’m so excited that CF Canada has established the Elevate program. I’ve learned so much from people living with CF in other countries, and to be able to hear directly from Canadians was really important for shaping this project. Consulting with the CF community through the Elevate program allowed me to learn about peoples experiences, and I was able to incorporate their ideas and feedback into the design of the study. I am extremely grateful to CF Canada for introducing this program.
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