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locked-in syndrome - Clinical Profile, Genes & Research | Kisho | Kisho

Rare Disease

locked-in syndrome

MONDO:0016567

Also known as:Cerebromedullospinal disconnectionlocked-in state

Find Clinical TrialsTrials

Overview

Locked-in syndrome (LIS) is a neurological condition characterized by the presence of sustained eye opening, quadriplegia or quadriparesis, anarthria, preserved cognitive functioning and a primary code of communication that uses vertical eye movements or blinking.

Clinical Trials9 registered · 6 recruiting

Diagnosis

Biomarker and diagnostic research for locked-in syndrome has been reported in the published literature.

Prognosis

Estimated prevalence: <1 in 1,000,000 (VERY_RARE).

Research Landscape

Sourced from ClinicalTrials.gov and PubMed. Publication types are classified using NLM-curated article metadata; research type breakdowns reflect the nature of published work for this disease.

9 clinical trials registered, 6 recruiting. Interventions under study include medical devices and procedural interventions. Pipeline includes 9 NA. Research is primarily sponsored by academic and government institutions.

NCT ID	Title	Phase	Sponsor	Status
[NCT05724173](https://clinicaltrials.gov/study/NCT05724173)

Data assembled from 4 of 12 sources · Last updated Sep 20, 2026, 11:12 AM UTC

MONDOHPOClinicalTrials.govFDAPubMedHGNCClinVarClinGenGeneReviewsOrphanetOMIMRUSP

Medical References

External Resources

Orphanet

European rare disease database

Orphanet:2406

GARD

Genetic and Rare Diseases Info Center

GARD:6919

Questions for Your Care Team

→Are any of the 9 active clinical trials a good fit for my situation?
→Are there specialists or centers of excellence for this condition in my area?
→Is there a patient registry I should consider joining?

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Research Type	Count	% of Total
Patient case studies	18	27%
Laboratory research	15	23%
Research summaries	13	20%
New treatment approaches	7	11%
Other research	5	8%
Testing and diagnosis research	3	5%
Disease patterns and progression	3	5%
Clinical study results	2	3%

locked-in syndrome

Overview

Diagnosis

Prognosis

Research Landscape

Medical References

External Resources

Orphanet

GARD

Related Diseases

Questions for Your Care Team

Questions for Your Care Team

Recent Publications