RecruitingACTRN12622000923763

Monash-Alfred Protocol for Assessment of Atypical Parkinsonian Syndromes (MAP-APS)

Sponsor

Alfred Health, Neurosciences department

Enrollment

60 participants

Start Date

Jun 14, 2022

Study Type

Observational

Conditions

Multiple Systems Atrophy Corticobasal Syndrome

Summary

The MAP-APS registry has been established to assess the feasability and utility of populating a standardised longitudinal dataset on participants with atypical parkinsonsian syndromes at a single site. The protocol has been devised to acquire enough clinical-biological data to perform deep clinical phenotyping while maintaining brevity and minimising allocation of resources and burden on participants.

Eligibility

Sex: Both males and femalesMin Age: 18 Yearss

Plain Language Summary

Simplified for easier understanding

This registry study is focused on people living with atypical parkinsonian syndromes — a group of progressive neurological conditions that affect movement and can be harder to diagnose and treat than standard Parkinson's disease. The conditions included are Progressive Supranuclear Palsy (PSP), Multiple Systems Atrophy (MSA), and Corticobasal Syndrome (CBS). These are rare but serious conditions for which more detailed clinical data is urgently needed. The MAP-APS registry at Alfred Health collects detailed clinical and biological information from participants over time. The goal is to build a rich dataset that helps researchers better understand how these conditions develop, differ from one another, and how they change over the course of a person's life. This kind of long-term data is essential for developing better diagnostic tools and treatments in the future. You may be eligible if you have been formally diagnosed with PSP, MSA, or CBS by a consultant neurologist who specialises in movement disorders. There are no exclusion criteria listed, making this study broadly accessible to people living with these conditions.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Interventions

The Monash-Alfred Protocol for Assessment of Atypical Parkinsonsian Syndromes (MAP-APS) is a single-site longitudinal registry of patients with APS. Participants will undergo clinico-demographic a

The Monash-Alfred Protocol for Assessment of Atypical Parkinsonsian Syndromes (MAP-APS) is a single-site longitudinal registry of patients with APS. Participants will undergo clinico-demographic and biosampling procedures at entry and periodically to aggregate a database. Assessments include social and demographic data, medical and medication history. Disease specific neurological assessments using validated rating scales including the Movement Disorders Society - Unified Parkinson's Disease Rating Scale, the Progressive Supranuclear Palsy Rating Scale, Unified Multiple Systems Atrophy Rating Scale. General measures of function and disability include Hoehn and Yahr stage and Modified Rankin Scale. Cognitive screening assessment with the Montreal Cognitive Assessment, Frontal Assessment Battery and categorical fluency. Impact of disease and psychological assessments via validated patient reported outcomes including Neuro-QoL subscales and EQ-5D-5L. Biological samples include Magnetic Resonance Imaging of the brain and blood samples (4x10mL tubes in total). Eligible participants will be assessed at recruitment and then annually for up to 3 years; individuals within 5 years of index symptom onset will also undergo a once-off 6-month assessment.