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Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
From Disability to Diagnosis: Baseline Findings from the Calgary Functional Movement Disorder Registry
Andrea Soumbasis1,2, Brian Steele3, Megan Howlett1,4
1Department of Clinical Neurosciences, Cumming School of Medicine, University of Calgary, Calgary, Canada.
Background:
Functional movement disorder (FMD), a subtype of functional neurological disorder, is a complex neuropsychiatric syndrome characterized by inconsistent and incongruent motor symptoms. Despite its relatively high prevalence, FMD remains associated with delayed diagnosis, significant disability, and limited evidence to guide individualized treatment. The Calgary FMD Clinic employs an integrated neurological-psychiatric assessment model, and its registry offers an opportunity to describe characteristics of FMD.
Objectives:
To describe baseline demographic and clinical features of patients enrolled in the Calgary FMD Registry with particular attention to prior healthcare utilization and neuropsychiatric risk factors.
Methods:
This prospective registry-based cohort study includes patients with clinically established FMD evaluated by a neurologist and neuropsychiatrist at a tertiary center in Calgary, Canada. Standardized data collection encompasses demographics, motor and non-motor symptoms, psychiatric comorbidities, healthcare utilization, and validated outcome measures assessing symptom severity and impact. Descriptive and comparative statistics were performed between FMD phenotypes.
Results:
Seventy-seven participants were enrolled between April 2024 and April 2025. The cohort was predominantly female (n = 45, 58%), with median age of 43 years and median diagnostic delay of 12 months. Episodic presentations were more common (n = 44, 57%), while constant phenotypes demonstrated greater symptom burden and disability. Fatigue and anxiety were highly endorsed among both groups.
Conclusion:
The Calgary FMD Registry employs a unique neurological-psychiatric assessment model to characterize FMD phenotypes and neuropsychiatric correlates. This dataset provides a relative representation of the Canadian FMD population who are considered for intensive rehabilitation, with the intention to inform stratified rehabilitation and treatment pathways.
