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acute disseminated encephalomyelitis (ADEM) - Clinical Profile, Genes & Research | Kisho | Kisho

Rare Disease

acute disseminated encephalomyelitis

MONDO:0019383

Also known as:ADEMacute disseminated encephalitispost-infectious encephalomyelitis

Find Clinical TrialsTrials

Overview

Acute disseminated encephalomyelitis (ADEM) is a demyelinating disorder of the central nervous system.

TreatmentsNo approved treatments · 1 in pipeline

Clinical Trials12 registered · 7 recruiting

Patient Orgs1 organizations · Siegel Rare Neuroimmune Association

Clinical Presentation

Built from Human Phenotype Ontology (HPO) phenotype annotations and GeneReviews clinical descriptions. Features represent findings documented across known cases — not an exhaustive list of possible symptoms.

Features include always present findings: Encephalopathy; and very common findings: Diffuse white matter abnormalities, CNS demyelination, and EEG with generalized slow activity. 53 total HPO annotations.

Organ System	Phenotype Count	Example Features
Brain and nerves	19	Encephalopathy, Diffuse white matter abnormalities, Atypical behavior

Diagnosis

Biomarker and diagnostic research for acute disseminated encephalomyelitis has been reported in the published literature.

Treatment

Compiled from FDA-approved drug records, orphan drug designations, and FDA Adverse Event Reporting System (FAERS) safety data. GeneReviews management guidance is included where available.

No approved treatments are currently available for acute disseminated encephalomyelitis. An additional 1 compound holds orphan drug designation.

Orphan Drug Designations

While no drugs are FDA-approved specifically for acute disseminated encephalomyelitis, some of the following designated compounds may be used off-label in clinical practice. Treatment decisions should be made in consultation with a specialist familiar with this condition.

The following drugs have received orphan drug designation from the FDA for acute disseminated encephalomyelitis. Orphan designation reflects regulatory interest and does not indicate approval for treatment.

Brand Name	Generic Name	Sponsor

Prognosis

Phenotype severity distribution: 1 always present feature, 3 very common features, 23 common features.

Estimated prevalence: Unknown (Unknown prevalence).

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.

12 clinical trials registered, 7 recruiting. Interventions under study include other interventions, drug therapy, and medical devices. Pipeline includes 4 NA. Research is primarily sponsored by academic and government institutions.

NCT ID	Title	Phase	Sponsor	Status
[NCT05017142](https://clinicaltrials.gov/study/NCT05017142)

Data assembled from 6 of 12 sources · Last updated Sep 20, 2026, 7:56 AM UTC

MONDOHPOClinicalTrials.govFDAPubMedHGNCClinVarClinGenGeneReviewsOrphanetOMIMRUSP

Patient Support

Patient Advocacy Groups

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Siegel Rare Neuroimmune AssociationPrimary Focus

USWebsite ↗

Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.

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Medical References

External Resources

Orphanet

European rare disease database

Orphanet:83597

GARD

Genetic and Rare Diseases Info Center

GARD:8639

Questions for Your Care Team

→Are any of the 12 active clinical trials a good fit for my situation?
→What is the current development status of (R)-2-((1-(2-(4-methoxy-3-(2-morpholinoethoxy) phenyl)-5-methylthiazol-4-yl)ethyl)thio)pyrimidine-4,6-diamine, and when might it become available?
→Are there specialists or centers of excellence for this condition in my area?
→How can I connect with Siegel Rare Neuroimmune Association and other patient organizations for support?

← Back to All Diseases

Research Type	Count	% of Total
Patient case studies	44	35%
Research summaries	36	29%
Disease patterns and progression	24	19%
Laboratory research	7	6%
Clinical study results	6	5%
Testing and diagnosis research	5	4%
Other research	1	1%
New treatment approaches	1	1%

Kisho

acute disseminated encephalomyelitis

Overview

Clinical Presentation

Diagnosis

Treatment

Orphan Drug Designations

Prognosis

Research Landscape

Patient Support

Patient Advocacy Groups

Medical References

External Resources

Orphanet

GARD

Questions for Your Care Team

Questions for Your Care Team

Explore clinical features

Clinical Trials

Recent Publications

Latest News & Developments

Myelin Oligodendrocyte Glycoprotein (MOG) Antibody-Associated Disease Presenting as Acute Disseminated Encephalomyelitis Following COVID-19 mRNA Vaccination.

acute disseminated encephalomyelitis

Overview

Clinical Presentation

Diagnosis

Treatment

Orphan Drug Designations

Prognosis

Research Landscape

Patient Support

Patient Advocacy Groups

Medical References

External Resources

Orphanet

GARD

Related Diseases

Questions for Your Care Team

Questions for Your Care Team

Explore clinical features

Clinical Trials

Recent Publications

Latest News & Developments

Myelin Oligodendrocyte Glycoprotein (MOG) Antibody-Associated Disease Presenting as Acute Disseminated Encephalomyelitis Following COVID-19 mRNA Vaccination.