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ORPHA:284

Alveolar echinococcosis

high confidenceDisorder

Also known as: Echinococcus multilocularis infection

Publications

3,806

95.7th percentile

Trials

2

Interventional, condition-specific

Researchers

1,099

Distinct authors in sample

Gene link

—

Readiness

2/6

Stages with a signal

Clinical definition (Orphanet)

A rare parasitic disorder that occurs after ingestion of eggs of Echinococcus multilocularis and characterized by an initial asymptomatic incubation period of many years followed by a chronic course where the clinical manifestations include epigastric pain and jaundice.

How rare: 1-9 / 1 000 000 — roughly one to nine people per million. In a city the size of Kolkata, perhaps a few dozen.

Orphanet entry

Cross-references

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

Additional Mondo synonyms (3)

Echinococcus multilocularis caused disease or disorder · Echinococcus multilocularis disease or disorder · Echinococcus multilocularis infectious disease

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

    3,806 matched papers (2,167 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?

3,806

3,806 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.

3,806 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).

2,167 in the last 10 years · high confidence · 95.7th percentile (publications denominator)

Phrase hits: 3,806 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,099

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
    Zhang X15 papers · 2026

    Imaging Center, Qinghai University Affiliated Hospital, Xining, 810001, China.

    Papers in Europe PMC
  2. 02
    Li L13 papers · 2026

    World Health Organization (WHO) Collaborating Center on Prevention and Management of Echinococcosis, Clinical Medicine Institute, First Affiliated Hospital of Xinjiang Medical University, Urumqi, China.

    Papers in Europe PMC
  3. 03
    Ma X11 papers · 2026

    State Key Laboratory of Pathogenesis, Prevention and Treatment of High Incidence Diseases in Central Asia, Clinical Laboratory Center, Tumor Hospital Affiliated to Xinjiang Medical University, Urumqi, Xinjiang, P.R. China.

    Papers in Europe PMC
  4. 04
    Ma Y11 papers · 2026

    Department of Pediatrics, Qinghai University Affiliated Hospital, No. 29, Tongren Road, Xining City, Qinghai, 810000, China; Research and Management Department, Qinghai University Affiliated Hospital, No. 29, Tongren Road, Xining City, Qinghai, 810000, China.

    Papers in Europe PMC
  5. 05
    Wang L11 papers · 2026

    State Key Laboratory of Pathogenesis, Prevention and Treatment of High Incidence Diseases in Central Asia, Clinical Laboratory Center, Tumor Hospital Affiliated to Xinjiang Medical University, Urumqi, Xinjiang, P.R. China.

    Papers in Europe PMC
  6. 06
    Aji T10 papers · 2026

    Hepatobiliary & Hydatid Disease Department, Digestive & Vascular Surgery Center, First Affiliated Hospital of Xinjiang Medical University, State Key Laboratory of Pathogenesis, Prevention and Treatment of High Incidence Diseases in Central Asia, Urumqi, China.

    Papers in Europe PMC
  7. 07
    Lin R10 papers · 2026

    World Health Organization (WHO) Collaborating Center on Prevention and Management of Echinococcosis, Clinical Medicine Institute, First Affiliated Hospital of Xinjiang Medical University, Urumqi, China.

    Papers in Europe PMC
  8. 08
    Zhang Y10 papers · 2026

    School of Public Health, Jiangxi Medical College, https://ror.org/042v6xz23Nanchang University, China.

    Papers in Europe PMC
  9. 09
    Chen J9 papers · 2026

    State Key Laboratory of Pathogen and Biosecurity, Beijing Institute of Microbiology and Epidemiology, Beijing 100071, China.

    Papers in Europe PMC
  10. 10
    Fan H9 papers · 2026

    Department of Hepatopancreatobiliary Surgery, Affiliated Hospital of Qinghai University, Xining, 810001, Qinghai, People's Republic of China. fanhaining@medmail.com.cn.

    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. 7 trials are registered for echinococcosis, 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).

high 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: echinococcosis

7

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

2 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.

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.

"Alveolar echinococcosis" OR "Echinococcus multilocularis infection" OR "Echinococcus multilocularis infectious disease"

Run this search on Europe PMC

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

"Alveolar echinococcosis" OR "Echinococcus multilocularis infection" OR "Echinococcus multilocularis infectious disease"

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

Parent-category trials query:

"echinococcosis"

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

Run this search on ClinicalTrials.gov

Synonyms dropped by stoplist: Echinococcus multilocularis caused disease or disorder; Echinococcus multilocularis disease or disorder

Confidence reasoning

  • Preferred label is multi-word and distinctive
  • No synonyms dropped by stoplist
  • No label/synonym collisions with other diseases in this corpus

Ingested 2026-07-26T13:12:46.387Z