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

Inclusion Criteria2

All participants must have an eligible diagnosis by a consultant Neurologist with subspeciality expertise in Movement Disorders.
Eligible diagnoses include: Progressive Supranuclear Palsy (PSP, Multiple Systems Atrophy (MSA), Corticobasal Syndrome (CBS)

Exclusion Criteria1

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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.