Multiple Sclerosis Society of Canada

Funded Research

NMOSD and MOGAD: Clinical Features, Prevalence and PROs

Year Awarded: 2022

Term: 3 years

Funding Amount: $247,181

Affiliation(s): St. Michael’s Hospital

Province(s): Ontario

Researcher(s): Dr. Dalia Rotstein

Impact Goal(s): Advance Treatment and Care

Summary:

  • Recently, there have been major advances in diagnosis and treatment of Neuromyelitis Optica Spectrum Disorder (NMOSD) and Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD). However, little is known about the prevalence and burden of these diseases in Canada.
  • In January 2021, Dr. Rotstein and team initiated CANOPTICS, the first prospective cohort study tracking clinical features and outcomes of adults with NMOSD, MOGAD and other atypical demyelinating diseases in Canada. In the current project, the research team will expand CANOPTICS to nine additional demyelinating disease clinics to achieve geographic representation across Canada and gain a better understanding of the characteristics and clinical features of these diseases and estimate their prevalence.
  • Knowledge gained from this research will help to identify specific needs of people with NMOSD and MOGAD, improve education to providers to facilitate earlier diagnosis and differentiation from MS, inform resource allocation and funding of new drugs.

Project Description:

Neuromyelitis Optica Spectrum Disorder (NMOSD) and Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD) are rare autoimmune diseases of the central nervous system that have some similarities to MS, but can be more challenging to diagnose and treat. Recently, there have been major advances in diagnosis and treatment of these disorders. However, little is known about prevalence and burden of these diseases in Canada. This knowledge gap limits our ability to identify specific needs of people with these diseases, advocate for resources, and fully evaluate the patient and health system impact of new therapies. In January 2021, Dr. Rotstein and team initiated CANOPTICS, the first prospective cohort study tracking clinical features and outcomes of adults with NMOSD, MOGAD and other atypical demyelinating diseases in Canada. In the current project, the research team will expand CANOPTICS to nine additional demyelinating disease clinics in Canada to achieve geographic representation across the country and gain a better understanding of the characteristics and clinical features of these diseases. They will also estimate the prevalence of these diseases which will help to inform resource allocation and funding of new drugs. The team will use questionnaires to gain insight into the most common and severe symptoms. Findings from this research will allow for more patient-centred care and better outcomes for people living with NMOSD and MOGAD in Canada.

Potential Impact:

This research will address unmet needs for those living with NMOSD and MOGAD in Canada by increasing our understanding of demographic and clinical characteristics of these diseases. In the short-term, this new knowledge will improve provider education and facilitate earlier diagnosis of these conditions and differentiation from MS. In the long-term, this work will allow us to monitor how advances in diagnostics and therapeutics are being implemented over time, respond to challenges that arise, and educate other providers accordingly.

Project Status: Ongoing

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