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ORPHA:641496

Childhood-onset schizophrenia

medium confidenceDisorder

Also known as: COS · VEOS · Very early-onset schizophrenia

Publications

1,278

90.5th percentile

Trials

2

Interventional, condition-specific

Researchers

1,080

Distinct authors in sample

Gene link

—

Readiness

2/6

Stages with a signal

Clinical definition (Orphanet)

A rare neurologic disease with psychiatric involvement characterized by prominent pre-psychotic developmental disabilities (cognitive, language, motor), socio-communicative disturbances, auditory hallucinations (visual and tactile hallucinations are rarer) preceding psychotic symptoms, presenting before 13 years of age. Co-occurrence of neurodevelopmental disorders (e.g. autism spectrum disorders, attention deficit hyperactivity disorder) is frequent. Disease course is more severe than adult-onset form of the disease, with major neurodevelopmental impact.

How rare: 1-5 / 10 000 — about one to five people per ten thousand (still uncommon, but less ultra-rare).

Orphanet entry

Cross-references

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

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

    1,278 matched papers (521 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

    2 matched on ClinicalTrials.gov

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?

1,278

1,278 papers have been published on this condition. That is a real research literature — still far smaller than common diseases (breast cancer: over 700,000 papers). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=5449) is 41.

1,278 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).

521 in the last 10 years · medium confidence · 90.5th percentile (publications denominator)

Phrase hits: 1,278 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,080

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
    Rapoport JL10 papers · 2025

    Child Psychiatry Branch, National Institute of Mental Health, NIH, Maryland.

    Papers in Europe PMC
  2. 02
    Vicari S7 papers · 2026

    Child and Adolescence Neuropsychiatry Unit, Bambino Gesù Children's Hospital IRCCS, Rome, Italy.

    Papers in Europe PMC
  3. 03
    Driver DI6 papers · 2025

    National Institute of Mental Health, National Institutes of Health, Bethesda, MD, United States of America.

    Papers in Europe PMC
  4. 04
    Markovic A6 papers · 2026

    University Hospital of Child and Adolescent Psychiatry and Psychotherapy, University of Bern, Switzerland; Graduate School for Health Sciences, University of Bern, Switzerland.

    Papers in Europe PMC
  5. 05
    Tarokh L6 papers · 2025

    Translational Research Center, University Hospital of Psychiatry and Psychotherapy, University of Bern, Bolligenstrasse 111, Haus A, 3000, Bern, Switzerland.

    Papers in Europe PMC
  6. 06
    Askenazy F5 papers · 2025

    Department of Child and Adolescent Psychiatry, Children's Hospitals of Nice CHU-Lenval, 06200 Nice, France.

    Papers in Europe PMC
  7. 07
    Buckley A5 papers · 2025

    National Institute of Mental Health, National Institutes of Health, Bethesda, MD, United States of America.

    Papers in Europe PMC
  8. 08
    Fernandez A5 papers · 2025

    Department of Child and Adolescent Psychiatry, Children's Hospitals of Nice CHU-Lenval, 06200 Nice, France.

    Papers in Europe PMC
  9. 09
    Gochman P5 papers · 2018

    Child Psychiatry Branch, National Institute of Mental Health, NIH, Maryland.

    Papers in Europe PMC
  10. 10
    Pontillo M5 papers · 2025

    Child and Adolescence Neuropsychiatry Unit, Bambino Gesù Children's Hospital IRCCS, Rome, Italy. maria.pontillo@opbg.net.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

2

interventional trials for this specific condition

2 interventional trials matched this specific condition name; none in our sample are currently recruiting. 3,026 trials are registered for schizophrenia, the broader category — shown separately because they may or may not enrol this specific subtype.

Data as of 27 July 2026

2 interventional trials — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 82.4th percentile).

medium confidence · 82.4th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

No currently recruiting studies in the matched set. Open the same search on ClinicalTrials.gov.

Broader category: schizophrenia

3,026

Interventional trials for the parent category, exclusive of NCT IDs already counted above. Eligibility for this subtype is not guaranteed.

Worth raising with a clinician. How we count trials.

Recruiting under the broader category

Observational and natural-history studies

1 observational study matches 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.

None of the matched observational studies is currently listed as 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.

"Childhood-onset schizophrenia" OR "Very early-onset schizophrenia"

Run this search on Europe PMC

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

"Childhood-onset schizophrenia" OR "Very early-onset schizophrenia"

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: 2 interventional · 1 observational · 0 expanded access. Only interventional studies enter the trial headline.

Parent-category trials query:

"schizophrenia"

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

Run this search on ClinicalTrials.gov

Synonyms dropped by stoplist: COS; VEOS

Confidence reasoning

  • Preferred label is multi-word and distinctive
  • 2 synonym(s) dropped by stoplist (may under-count)
  • No label/synonym collisions with other diseases in this corpus

Ingested 2026-07-27T19:35:34.993Z