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ORPHA:2806

Subacute sclerosing leukoencephalitis

low confidenceDisorder

Also known as: Dawson encephalitis · SSPE · Subacute inclusion body encephalitis · Subacute sclerosing panencephalitis · Van Bogaert disease · Van Bogaert encephalitis

Publications

5,437

Trials

0

Interventional, condition-specific

Researchers

933

Distinct authors in sample

Gene link

—

Readiness

3/6

Stages with a signal

Clinical definition (Orphanet)

A rare infectious disease characterized by slowly brain disorder caused by a mutant measles virus, typically affecting children and young adults. The condition leads to cognitive decline, myoclonus, vision loss, and eventually a vegetative state.

How rare: <1 / 1 000 000 — fewer than one in a million. In a city the size of Kolkata, that might mean on the order of fifteen people.

Orphanet entry

Cross-references

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

Additional Mondo synonyms (3)

Immunosuppressive measles encephalitis · Subacute sclerosing panencephalitis (disorder) [ambiguous] · subacute sclerosing panencephalitis

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.”

3/6 stages with a signal

Research-stage checklist from open sources (GenCC, literature, Monarch when enriched, ClinicalTrials.gov). Not a prognosis or care recommendation.

  1. Gene identifiedNot found

    No GenCC disease–gene assertion in this build

  2. LiteraturePresent

    5,437 matched papers (1,250 in last 10 years) Source

  3. Phenotype characterisedPresent

    37 HPO annotations (e.g. Infectious encephalitis; Seizure; Lethargy) Source

  4. Animal modelNot found

    No Alliance genotype “model of” associations via Monarch for these Mondo IDs

  5. Orphan designationPresent

    1 FDA designation (1 FDA orphan-indication approval) — e.g. Inosine pranobex Source

  6. Interventional trialNot found

    No matched interventional trial under our ClinicalTrials.gov rules

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)

37

Associated phenotypes · MONDO:0009835

  • Infectious encephalitis
  • Seizure
  • Lethargy
  • Gait disturbance
  • EEG with periodic complexes

Showing 5 of 37 — open Monarch for the full list.

Animal models (Monarch / Alliance)

None returned for this Mondo ID. Empty here is not proof that no model organism work exists under another name or gene.

Monarch fetch 2026-07-29

Therapies

Designations, candidates, and chemicals

FDA OOPD and EMA orphan designations, Open Targets clinical candidates, and CTD chemical associations via MyDisease.info. These never change the interventional-trial headline.

Orphan designation (FDA · EMA)

1

Designation · 1 with FDA orphan-indication approval

  • FDA Inosine pranobexSubacute Sclerosing Panencephalitis · 1988-09-20 · Not FDA Approved for Orphan Indication

Sources: FDA OOPD · EMA orphan designations

Open Targets candidates

No drugs or clinical candidates returned for this Mondo ID on Open Targets.

CTD chemicals (MyDisease.info)

1 associated chemical. Therapeutic evidence is listed first when present — not a treatment recommendation.

  • Ribavirin · therapeutic

MyDisease.info · MONDO:0009835

Literature

Is anyone studying this?

5,437

5,437 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=3967) is 59.

5,437 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 59 (publications denominator n=3967).

1,250 in the last 10 years · low confidence

Phrase hits: 5,437 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

933

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

Who's working on it?

No interventional trial matched this name; these authors publish on it in the sampled literature — a practical starting point for contact.

  1. 01
    Garg RK15 papers · 2026

    Neurology, King George's Medical University, Lucknow, IND.

    Papers in Europe PMC
  2. 02
    Pandey S15 papers · 2026

    Department of Neurology, King George Medical University, Lucknow, India.

    Papers in Europe PMC
  3. 03
    Garg D14 papers · 2026

    Department of Neurology, Vardhman Mahavir Medical College and Safdarjung Hospital, New Delhi, India.

    Papers in Europe PMC
  4. 04
    Rizvi I11 papers · 2026

    Department of Neurology, King George Medical University, Lucknow, India.

    Papers in Europe PMC
  5. 05
    Kumar N9 papers · 2024

    Department of Neurology, King George Medical University, Lucknow, India.

    Papers in Europe PMC
  6. 06
    Uniyal R8 papers · 2024

    Department of Neurology, King George Medical University, Lucknow, India.

    Papers in Europe PMC
  7. 07
    Jain A7 papers · 2026

    Department of Microbiology, King George Medical University, Lucknow, India.

    Papers in Europe PMC
  8. 08
    Malhotra HS7 papers · 2024

    Department of Neurology, King George Medical University, Lucknow, India.

    Papers in Europe PMC
  9. 09
    Sharma S7 papers · 2026

    Department of Pediatrics (Neurology Division), Lady Hardinge Medical College, New Delhi, India.

    Papers in Europe PMC
  10. 10
    Agarwal A6 papers · 2026

    Department of Neurology, All India Institute of Medical Sciences, New Delhi, India.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

0

interventional trials for this specific condition

No interventional trial testing a treatment matched this specific condition name on ClinicalTrials.gov (observational studies and pan-disease registries are listed separately when present).

Data as of 11 September 2026 · last trial check 11 September 2026

No matched interventional trials. This is true for 77.2% of diseases in the trials denominator (5501 of 7126). Here are the researchers publishing on it.

low confidence · 38.6th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

No interventional trial testing a treatment was found for this specific condition name on ClinicalTrials.gov.

See who's working on it — people publishing on this disease are often the practical next contact when no trial is listed.

Other registries (secondary)

Broader net from EU CTIS, ISRCTN, and ICTRP when available — deduped against ClinicalTrials.gov IDs already counted above. Dual-model LLM relevance gates what we keep. These rows are not added to the interventional headline.

raw 0 · after dedupe 0 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 0 · dropped 0 · fetched 2026-07-29

Source notes: ictrp: Error: ICTRP public search unavailable (WHO portal is SPA-only; SOAP needs partnership). Tried: https://apps.who.int/tri

No secondary-registry studies passed dual-model relevance for this condition name (after dedupe).

Where to find support

Condition-specific patient organisations, when Orphanet lists them, are on the disease’s Orphanet page. We also link umbrella groups that support undiagnosed and ultra-rare families.

Orphanet entry for Subacute sclerosing leukoencephalitis — check Associations / patient organisations on that page.

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.

"Subacute sclerosing leukoencephalitis" OR "Dawson encephalitis" OR "Subacute inclusion body encephalitis" OR "Subacute sclerosing panencephalitis" OR "Van Bogaert disease" OR "Van Bogaert encephalitis" OR "Immunosuppressive measles encephalitis" OR "Subacute sclerosing panencephalitis (disorder) [ambiguous]"

Run this search on Europe PMC

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

"Subacute sclerosing leukoencephalitis" OR "Dawson encephalitis" OR "Subacute inclusion body encephalitis" OR "Subacute sclerosing panencephalitis" OR "Van Bogaert disease" OR "Van Bogaert encephalitis" OR "Immunosuppressive measles encephalitis" OR "Subacute sclerosing panencephalitis (disorder) [ambiguous]"

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

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

Run this search on ClinicalTrials.gov

Synonyms dropped by stoplist: SSPE

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 (5437) is implausibly high for prevalence class "<1 / 1 000 000" — treat as possible over-matching, not a measure of research intensity

Ingested 2026-07-26T21:16:19.445Z