Canadian Prospective Cohort to Understand Progression in People Living with MS (CanProCo) Pediatric-onset Multiple Sclerosis (POMS) Subcohort
- The onset of MS prior to age 18, during pivotal periods of cognitive maturation and development, has a profound impact on the child and their family. A fundamental unmet need is to understand the impact of pediatric-onset MS (POMS) and the recently identified myelin oligodendrocyte glycoprotein associated disease (MOGAD) into adulthood.
- This study will continue to follow POMS and MOGAD participants as a sub-cohort of CanProCo to allow for longer-term follow-up and understanding of their disease trajectory.
- The merging of these two rich datasets will allow for greater insights into MS disease progression from childhood through to adulthood.
Since 2004 the Multiple Sclerosis Scientific Research Foundation has supported the Canadian Pediatric Demyelinating Disease Study (CPDDS) to gain a better understanding of POMS and its clinical features. Participants and their families have generously contributed a wealth of clinical, imaging, immunological, genetic and outcomes data for the past 16 years. The CPDDS is an incident cohort, with children enrolled at the time of their first demyelinating attack and monitored over a 10-16 year period. To date the study has enrolled over 700 participants including those with relapsing-remitting POMS and MOGAD.
The CPDDS has shown that children with POMS have distinct clinical features, including a low risk for physical disability during childhood or adolescence, but a significant risk for cognitive impairment and high levels of depression and fatigue. MRI studies also showed that the “progressive” aspect of MS starts as early as you can measure it as individuals with POMS have reduced maximal brain volumes and progressive loss of brain volume by teenage years. Additionally, the CPDDS has assembled the largest prospective MOGAD cohort which provides important insights into the role of anti-MOG antibodies into demyelinating diseases, although the long-term clinical course of these patients is unknown. As these children are now becoming young adults, it becomes even more important to understand the likelihood of progressive disability, capacity for vocational or academic achievement, and their quality of life over time.
The Canadian Prospective Cohort Study to Understand Progression in MS (CanProCo) provides an opportunity to continue to follow up to approximately 100 participants and allow for longer-term follow-up as well as comparisons of their disease trajectories compared to adult-onset MS patients. CanProCo brings together over 50 researchers in Canada with a wide range of scientific expertise in health outcomes, epidemiology, neuroimmunology, and neuroimaging to evaluate the impact of various biological, environmental and health systems factors on disease progression. The merging of these two rich datasets will allow for insights into disease progression across the spectrum of MS.
A fundamental unmet need is to understand the impact of POMS and MOGAD into adulthood, particularly on progressive disability, vocational or academic achievement, and overall quality of life. Integrating CPDDS participants who are now adults into CanProCo will ensure that the wealth of data that has already been collected over the last 16 years will be utilized to enhance our understanding of MS progression across the age-span.
Project Status: In progress
This research is funded by Brain Canada Foundation, Biogen Canada Inc., and Hoffman-La Roche Limited (Roche). Brain Canada is providing $350,000, Biogen is providing $499,064.50, and Roche is providing $499,064.50 in support of this research.
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