Multiple System Atrophy (MSA)

MSA is a fatal, rapidly progressive neurodegenerative disease combining autonomic failure with parkinsonism or ataxia, and mimics Parkinson’s disease. Median time to diagnosis is 4.2 years against 7.5 years to death.

About Multiple System Atrophy

In numbers

US claims data give 41,133 people coded with MSA on a one-code definition and roughly 19,000 on a two-code definition, in the same database and year (Kaplan et al., Parkinsonism and Related Disorders, 2023). The count depends on how a case is defined.
Median time from first symptom to diagnosis is 4.2 years and median survival from first symptom is 7.5 years, so more than half of the course passes under the wrong label, or none (Coon et al., Brain, 2015; Krismer et al., Lancet Neurology, 2024).
Around 30% of people carrying an MSA diagnosis in clinic have a different disease at autopsy (Sekiya et al., Neurology, 2024), and nearly 19% of people who have MSA never receive the label in life (derived from Coon 2015 and Miki et al., Brain, 2021).

Special details

Autonomic symptoms often arrive first and reach the wrong specialty. Urogenital symptoms are the sole initial manifestation in 18% of people, a mean 2.8 years before any motor sign (Wenning et al., Movement Disorders, 2022).
A partial early levodopa response is common, so re-evaluation typically waits a year or more. There is no confirmatory test in life, and US coding is unstable, as ICD-10 G23.3 changed meaning in FY2024. No published study has counted how many specialists people see before diagnosis.
The EU4 countries and the UK together account for roughly 11,000 diagnosed prevalent cases as of 2023. MSA shows a slight male predominance, close to 1.1 to 1, and MSA-P makes up 60 to 65 percent of Western cohorts while MSA-C is more common in Japan and East Asia.

Signs and symptoms of Multiple System Atrophy

More than half the course passes before diagnosis. The label is unreliable both ways, as around 30% of people coded as MSA have another disease and nearly 19% who have MSA are never labelled.

Orthostatic hypotension

Lightheadedness, presyncope or fainting on standing, often first put down to dehydration or medication.

Urinary and sexual dysfunction

Urgency, incomplete emptying or erectile dysfunction, an early autonomic marker preceding motor signs.

Parkinsonism with poor levodopa response

Symmetric rigidity and bradykinesia that responds weakly, unlike typical Parkinson's disease.

Cerebellar ataxia

Unsteady, wide-based gait with dysarthria in the MSA-C subtype.

Inspiratory stridor

A late feature carrying serious respiratory risk, often preceding aspiration pneumonia.

Key challenges from product development to launch

Strategy and Business

The wrong disease or indication selected for investment
Indications tackled in the wrong order due to shaky success estimates
R&D returns slipping below the cost of capital

Clinical Development

Trials delayed by low patient recruitment
High screen-failure rates that raise trial cost
Mixed cohorts that make the signals difficult to detect

HEOR, Access & Value

A value case that arrives too late or is underdeveloped
Eligible population under-counted, budget-impact case unsubstantiated
Approved by the regulator, delayed at HTA

Medical Affairs

Fragmented, differently-coded healthcare data
Diagnostic delay that is long and unequal
No shared evidence base across functions

Launch and Commercial

Launch planned without a view of the number of findable patients
Targeting too broad a population slows early uptake
RWE started too late to build the case

How Volv Global Helps

Strategy and Business

The earliest pipeline decisions carry lasting consequences: the wrong indication chosen, indications pursued in the wrong order, or capital committed where expected returns already trail its cost. Mistakes made this early are expensive to correct later.

inTrigue

Finds the true reachable population per candidate, so indication choices rest on evidence.

volv.global/finding-patients

inFlow

Adds probability-of-success and outcome evidence to help prioritise the pipeline.

volv.global/predict-patient-outcomes

Clinical Development

When patients cannot be found, recruitment stalls and the burn rate climbs. High screen-failure rates add further cost and delay, and a mixed cohort makes the results harder to interpret.

inTrigue

Finds the undiagnosed and mis-coded patients conventional feasibility misses, widening the recruitable pool.

volv.global/finding-patients

inCare

Surfaces diagnosed-but-hidden, trial-eligible patients already in the data, so sites enrol faster.

volv.global/stratifying-patient-cohorts

inFlow

Predicts who will progress or respond, enriching the cohort so the signal is not diluted.

volv.global/predict-patient-outcomes

HEOR, Access & Value

Without strong, timely evidence, payers can restrict access or cut the price. An under-characterised population weakens the budget case, and HTA approval demands more evidence than regulatory approval alone.

inFlow

Generates the real-world evidence and outcomes payers ask for, ahead of the submission deadline.

volv.global/predict-patient-outcomes

inTrigue

Finds the undiagnosed patients missing from the count, so the eligible population holds up under scrutiny.

volv.global/finding-patients

inCare

Surfaces the diagnosed-but-eligible patients who expand the eligible population count.

volv.global/stratifying-patient-cohorts

Medical Affairs

Healthcare data is fragmented across markets, so evidence has to be rebuilt market by market, slowing decisions. Time to an accurate diagnosis varies by who the patient is and where they are treated.

inTrigue

Works across fragmented, differently-coded data by design, so insight holds up country to country without a rebuild.

volv.global/finding-patients

inAdvance

Detects patients ahead of typical diagnosis, closing the gap in awareness and pathway that drives unequal delay.

volv.global/earlier-detection

Launch and Commercial

A launch planned without a view of findable patients is poorly resourced from day one. Targeting too broad a population slows early uptake, and real-world evidence gathered too late leaves little time to build a strong access dossier.