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ORPHA:83597

Acute disseminated encephalomyelitis

low confidenceDisorder

Also known as: ADEM · Acute demyelinating encephalomyelitis · Acute disseminated encephalitis

Publications

9,430

Trials

5

Interventional, condition-specific

Researchers

1,268

Distinct authors in sample

Gene link

—

Readiness

2/6

Stages with a signal

Clinical definition (Orphanet)

A demyelinating disorder of the central nervous system.

How rare: How common this is has not been clearly measured.

Orphanet entry

Cross-references

Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.

Additional Mondo synonyms (3)

acute disseminated encephalitis · acute disseminated encephalomyelitis · post-infectious encephalomyelitis

Research stages

Trial readiness signals

Where this condition sits on an open-data research pipeline — not how close a treatment is, and not medical advice. Empty stages often mean “not in these databases under this Mondo ID,” not “impossible.”

2/6 stages with a signal

An interventional trial matched this condition name on ClinicalTrials.gov — see trials below.

  1. Gene identifiedNot found

    No GenCC disease–gene assertion in this build

  2. LiteraturePresent

    9,430 matched papers (6,170 in last 10 years) Source

  3. Phenotype characterisedNot checked

    Not yet enriched from Monarch / HPO

  4. Animal modelNot checked

    Not yet enriched from Monarch / Alliance

  5. Orphan designationNot checked

    FDA/EMA orphan-drug designation not enriched yet

  6. Interventional trialPresent

    5 matched on ClinicalTrials.gov (3 recruiting in sample)

Biology

Genes and phenotypes

Gene–disease validity from GenCC, plus phenotypes and animal models joined from Monarch Initiative via Mondo ID — not a clinical diagnosis aid.

Do we know what causes it?

Not yet — the cause hasn't been pinned down in GenCC.

No strong gene–disease assertion joined for this Orphanet entity.

Phenotypes (Monarch / HPO)

Not enriched in this build — Monarch phenotype joins were not run for this record.

Animal models (Monarch / Alliance)

Not enriched in this build.

Literature

Is anyone studying this?

9,430

9,430 papers — among the better-studied rare conditions, though still a fraction of common-disease literature (breast cancer: over 700,000). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=5449) is 41.

9,430 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 41 (publications denominator n=5449).

6,170 in the last 10 years · low confidence

Phrase hits: 9,426 · MeSH hits: 46

Open Europe PMC search

Who's working on it?

1,268

Distinct author names in 200 sampled papers — named people below.

Who's working on it?

People publishing on this condition (sampled Europe PMC records). Affiliation is the most recent found in that sample.

  1. 01
    Aljarallah S3 papers · 2026

    College of Medicine, King Saud University, Riyadh, Saudi Arabia.

    Papers in Europe PMC
  2. 02
    Booth S3 papers · 2025

    NHS Greater Glasgow and Clyde, Queen Elizabeth University Hospital, 1345 Govan Road, Glasgow G51 4TF, UK.

    Papers in Europe PMC
  3. 03
    Finsterer J3 papers · 2026

    Department of Neurology, Neurology & Neurophysiology Center, Vienna, Austria.

    Papers in Europe PMC
  4. 04
    Flanagan EP3 papers · 2026

    Departments of Neurology and Center for MS and Autoimmune Neurology Mayo Clinic College of Medicine and Science, Rochester, MN, USA.

    Papers in Europe PMC
  5. 05
    Gallacher S3 papers · 2025

    NHS Greater Glasgow and Clyde, Queen Elizabeth University Hospital, 1345 Govan Road, Glasgow G51 4TF, UK.

    Papers in Europe PMC
  6. 06
    Garmany P3 papers · 2025

    NHS Greater Glasgow and Clyde, Queen Elizabeth University Hospital, 1345 Govan Road, Glasgow G51 4TF, UK.

    Papers in Europe PMC
  7. 07
    Lim BC3 papers · 2026

    Department of Pediatrics, Seoul National University Children's Hospital, Seoul, Korea. prabbit7@snu.ac.kr.

    Papers in Europe PMC
  8. 08
    Starinskij I3 papers · 2025

    Medical Research Council-University of Glasgow Centre for Virus Research, Henry Wellcome Building, Garscube Campus, 464 Bearsden Road, Glasgow G61 1QH, UK.

    Papers in Europe PMC
  9. 09
    Abe Y2 papers · 2026

    Division of Neurology, Department of Medical Subspecialties, National Center for Child Health and Development, 2-10-1 Okura, Setagaya-Ku, Tokyo 157-8535, Japan.

    Papers in Europe PMC
  10. 10
    Alrifai MT2 papers · 2026

    College of Medicine, King Saud Bin Abdulaziz University for Health Sciences (KSAU-HS), Riyadh, Saudi Arabia.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

5

interventional trials for this specific condition

5 interventional trials matched this specific condition name; 3 currently recruiting in our sample.

Data as of 27 July 2026

5 interventional trials — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 87.9th percentile).

low confidence · 87.9th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

5 interventional trials matched after quoted-phrase search and title/condition post-filter.

Observational and natural-history studies

11 observational studies match this condition. These do not test a treatment and are not counted in the interventional-trial headline, but they are genuine research: natural-history work often defines the endpoints needed for a future rare-disease trial, and families may be able to enroll.

Recruiting or not-yet-recruiting

Open the complete matched search on ClinicalTrials.gov

Where to find support

We do not yet link condition-specific patient organisations. These umbrella groups support undiagnosed and ultra-rare families:

India — NPRD

Last verified 2026-07-26

This ORPHAcode is not on our curated NPRD list (direct or Mondo-parent match). That does not decide clinical eligibility; families in India should ask a notified Centre of Excellence about current coverage.

Hand-curated for this project. ORPHAcode mappings are best-effort and may be incomplete or imprecise for umbrella categories. Parent (Mondo) matches mean the policy lists a broader category — confirm eligibility with a Centre of Excellence. Financial entitlements summarised from public policy statements and may change. This is not official government guidance.

How we counted this

Europe PMC query (preferred label + any corrected label + Orphanet and Mondo exact synonyms, stoplisted; unioned with resolved MeSH labels when available). UMLS / OMIM / NCIT cross-references are stored on the overview but are not added to the query string.

"Acute disseminated encephalomyelitis" OR "Acute demyelinating encephalomyelitis" OR "Acute disseminated encephalitis" OR "post-infectious encephalomyelitis"

Run this search on Europe PMC

MeSH descriptor terms unioned into the query: Encephalomyelitis, Acute Disseminated

ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):

"Acute disseminated encephalomyelitis" OR "Acute demyelinating encephalomyelitis" OR "Acute disseminated encephalitis" OR "post-infectious encephalomyelitis" OR "Encephalomyelitis, Acute Disseminated"

Interventional trials matched via: phrase (mesh = registered under a MeSH descriptor no name phrase would catch; recall-expansion = gene / selected parent terms used only for trials).

Study-type breakdown: 5 interventional · 11 observational · 0 expanded access. Only interventional studies enter the trial headline.

Query health: ok — strategies attempted: phrase, mesh; with hits: phrase, mesh

Run this search on ClinicalTrials.gov

Synonyms dropped by stoplist: ADEM

Confidence reasoning

  • Preferred label is multi-word and distinctive
  • 1 synonym(s) dropped by stoplist (may under-count)
  • No label/synonym collisions with other diseases in this corpus
  • Publication count (9430) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity

Ingested 2026-07-27T02:40:10.074Z