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Condition (MeSH)

Locked-In Syndrome

ClinicalTrials.gov lists 19 trials for Locked-In Syndrome or a narrower condition beneath it. VA Office of Research and Development has the most among industry and government lead sponsors, with 1.

MeSH D000080422 Nervous System Diseases C10 C23 Listed by Orphanet as a rare disease
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Not applicable Not applicable 18 Observational Observational 1 Not applicable Not applicable 18 Observational Observational 1

Trials per phase

19 of the 19 trials are tagged with Locked-In Syndrome itself; the rest are tagged with a narrower condition beneath it.

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When did Locked-In Syndrome trials start? (11)

Shown in this order: most recent first, 1990 onwards. 2026 is partial: trials registered with a 2026 start date so far, not a full year.

Trials over time, by phase

  • Not applicable
  • Observational

Top of scale: 3

2009: 1 trials (Not applicable 1) 2013: 1 trials (Not applicable 1) 2015: 1 trials (Not applicable 1) 2016: 1 trials (Not applicable 1) 2017: 3 trials (Observational 1, Not applicable 2) 2021: 2 trials (Not applicable 2) 2022: 2 trials (Not applicable 2) 2023: 3 trials (Not applicable 3) 2024: 1 trials (Not applicable 1) 2025: 1 trials (Not applicable 1)

Trials registered with a start date in each year, 1990 onward, stacked by phase (complete years only; the current partial year is in the table's notes). The table below lists the same counts, most recent years first.

Trials started per year
Year Trials started
2026 (partial year) 3
2025 1
2024 1
2023 3
2022 2
2021 2
2017 3
2016 1
2015 1
2013 1

No forecast is made for this condition: it averages 1.8 trial starts a year over the five years to September, under the 5 a year the method needs.

Recruitment duration, a model prediction: 4 trials still running at the 2026-10-09 snapshot, fewer than the 5 needed for a median. Source: ClinicalTrials.gov / AACT (CTTI), public domain.

What phase are Locked-In Syndrome trials in? (2)

Shown in this order: phase order.

Show the trials by phase as a table
Trials by phase
Phase Trials
Not applicable 18
Observational 1

How many Locked-In Syndrome trials are recruiting? (7)

Shown in this order: the order a trial moves through, from not yet recruiting to unknown.

Trials by recruitment status
Status Trials
Not yet recruiting 3
Recruiting 6
Enrolling by invitation 1
Completed 4
Terminated 1

Status as registered on ClinicalTrials.gov. Each trial is counted once.

Which lead sponsors run the most Locked-In Syndrome trials? (1)

Shown in this order: most trials first. Lead sponsors the registry classes as industry, NIH, US federal, other government or network. A hospital or university the registry files as government can appear here. Sponsors it classes as academic or other are shown on the full page, because that class cannot separate an institution from a named investigator.

Lead sponsors
Sponsor Trials
VA Office of Research and Development 1

Which serious adverse events do Locked-In Syndrome trials report? (6)

Shown in this order: most subjects affected first. Subjects affected summed across trials, a cross-trial signal, not a rate.

Serious adverse events in this condition's trials
Adverse event Subjects affected Trials
disease related respiratory failure 2 1
pneumonia 2 1
Hypotension 1 1
fever 1 1
low oxygen 1 1

Which publications cover Locked-In Syndrome? (4)

Shown in this order: major-topic papers first, then newest, then most linked to trials.

Publications
Publication Journal Year Major topic
The challenge of controlling an auditory BCI in the case of severe motor disability. Journal of neuroengineering and rehabilitation 2024 Yes
Using fMRI to localize target regions for implanted brain-computer interfaces in locked-in syndrome. Clinical neurophysiology : official journal of the International Federation of Clinical Neurophysiology 2023 Yes
Dorsolateral prefrontal cortex-based control with an implanted brain-computer interface. Scientific reports 2020 Yes
New and emerging access technologies for adults with complex communication needs and severe motor impairments: State of the science. Augmentative and alternative communication (Baltimore, Md. : 1985) 2019 No

Prevalence (6)

Shown in this order: jurisdiction, then disease name. Orphanet observation for the mapped ORPHA concept; the mapping relation column says whether that concept is exactly this condition or broader or narrower.

Prevalence
Orphanet disease Type Class Geography Jurisdiction Mapping relation
Locked-in syndrome Point prevalence <1 / 1 000 000 Worldwide Not stated Exact
Locked-in syndrome Cases families Worldwide Not stated Exact
Locked-in syndrome Cases families Worldwide Not stated Unspecified
Locked-in syndrome Point prevalence <1 / 1 000 000 Worldwide Not stated Unspecified
Locked-in syndrome Cases families Worldwide Not stated Exact

Rare-disease identity (2)

Shown in this order: exact, broader, narrower, other.

Rare-disease identity
Orphanet disease ORPHA code Relation Source
Locked-in syndrome 2406 Exact Orphanet Rare Disease Ontology (ORDO)
Locked-in syndrome 2406 Exact Orphadata Science knowledge files, Product 1

Not on this page

Not measured: delivery record.

Checked, with nothing recorded for this condition: drugs tested and sub-conditions in mesh.

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