For Dr. Davide Martino, who leads the Calgary Parkinson Research Initiative (CaPRI), patient involvement in research is vital. “They can be advocates and advisors to researchers.”
The data patients provide can also give researchers information about how Parkinson’s develops and progresses—valuable insights that can lead to tangible improvements in treatment and care. CaPRI has already benefitted from the participation of hundreds of people in Alberta who are living with Parkinson’s. In addition, those without Parkinson’s can participate to act as “controls” so scientists can compare both those with and without the condition. Using that data, researchers are able to conduct critical studies to better understand the complex nature of this disease.
One way in which this could be useful is by identifying subtypes of Parkinson’s with the goal of developing more personalized therapies. Currently, when someone is diagnosed, they are given a standard program to follow. If scientists can identify biomarkers (early indicators) that show a person may develop Parkinson’s, or better understand how the condition evolves in each person, they may be able to develop treatments that are specifically tailored to different subtypes.
CaPRI is also one of eight sites involved in the first phase of the Canadian Open Parkinson Network (C-OPN), a platform to connect people living with Parkinson’s and related disorders with scientists who are conducting research in this area. In addition, C-OPN manages a de-identified database of medical information about those living with Parkinson’s and a research biobank that collects and stores biological specimens for use in research. Headquartered in Calgary at the Hotchkiss Brain Institute and led by Dr. Oury Monchi, the data collected through C-OPN will help accelerate knowledge, improve understanding and facilitate large-scale projects and trials.
“C-OPN brings together an outstanding breadth of expertise across disciplines that is not available elsewhere. It provides the ability to study biomarkers in a deep way. It stands the best chance to succeed in sub-typing and sub-grouping Parkinson’s diseases to help on the road to personalized medicine.”
Martino, who is originally from Italy, began working in Canada in 2016. He is now the Director of the Clinical Movement Disorders Program at the University of Calgary’s Department of Neurosciences. Having done a portion of his training in the UK, Martino has the unique perspective of someone who worked in multiple different health systems. This has been especially important as he contributed to the development of the CaPRI program, which involves coordinating with a number of different groups to meet a shared objective.
He sees the value of bringing together the community through C-OPN. “We can’t work in silos, we can’t collect large data in single institutions. C-OPN realizes this,” he said, noting that without a harmonized group of people working together, projects like CaPRI would not be possible. You must have proficient and efficient coordinators, patient associations and advocacy groups and, of course, people living with Parkinson’s and their loved ones. “You need different players at the table to be successful.”
The Calgary site of C-OPN is continuing to recruit participants with a goal of 100 new registrants this Spring. Martino hopes those living with Parkinson’s will see the value in taking part. “This is open to everyone, it’s quite unique. There isn’t a possibility that anyone will feel the research is not representing them.”
Your involvement is critical to helping C-OPN reach its goals. C-OPN is currently recruiting for thousands of patients from 2021 to 2026. Visit https://copn-rpco.ca/participants/ to learn more and register today.