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ORPHA:400

Cystic echinococcosis

low confidenceDisorder

Also known as: Hydatid cyst · Hydatid disease · Hydatidosis

Publications

23,378

Trials

6

Interventional, condition-specific

Researchers

1,016

Distinct authors in sample

Gene link

—

Readiness

4/6

Stages with a signal

Clinical definition (Orphanet)

A rare parasitic disease characterized by slowly enlarging cysts of the liver, lungs and other organs which often go unnoticed for years. They are caused principally by the larval form (also called metacestode) of Echinococcus granulosus sensu lato tapeworm. The adult form of this tapeworm parasitizes the intestine of dogs. Cystic echinococcosis (formerly hydatidosis) generally affects large domestic herbivores and humans are dead-end hosts, infected through contact with herding dogs or through ingestion of food contaminated with canine excrement.

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 (1)

hydatid 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.”

4/6 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

    23,378 matched papers (8,367 in last 10 years) Source

  3. Phenotype characterisedPresent

    45 HPO annotations (e.g. Urticaria; Increased total eosinophil count; Hemoptysis) Source

  4. Animal modelNot found

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

  5. Orphan designationPartial

    1 FDA designation (none yet with FDA orphan-indication approval) — e.g. Albendazole Source

  6. Interventional trialPresent

    6 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)

45

Associated phenotypes · MONDO:0018408

  • Urticaria
  • Increased total eosinophil count
  • Hemoptysis
  • Anaphylactic shock
  • Hepatic cysts

Showing 5 of 45 — 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 · no FDA orphan-indication approval yet

  • FDA Albendazole (Albenza)Hydatid disease Alveolar echinococcosis Hydatid Disease · 1996-01-17

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)

No CTD chemical associations returned for this Mondo ID.

Literature

Is anyone studying this?

23,378

23,378 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.

23,378 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).

8,367 in the last 10 years · low confidence

Phrase hits: 23,378 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,016

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
    Bouassida M5 papers · 2026

    Department of general surgery, Mohamed Taher Maamouri University hospital, Nabeul, Tunisia; Faculté de Médecine de Tunis, Université Tunis el Manar, Tunis, Tunisia.

    Papers in Europe PMC
  2. 02
    Touinsi H5 papers · 2026

    Department of general surgery, Mohamed Taher Maamouri University hospital, Nabeul, Tunisia; Faculté de Médecine de Tunis, Université Tunis el Manar, Tunis, Tunisia.

    Papers in Europe PMC
  3. 03
    Alouani H4 papers · 2026

    Department of general surgery, Mohamed Taher Maamouri University hospital, Nabeul, Tunisia. Electronic address: alouani.hazem@gmail.com.

    Papers in Europe PMC
  4. 04
    Lâamiri G4 papers · 2026

    Department of general surgery, Mohamed Taher Maamouri University hospital, Nabeul, Tunisia; Faculté de Médecine de Tunis, Université Tunis el Manar, Tunis, Tunisia.

    Papers in Europe PMC
  5. 05
    Ahmad R3 papers · 2026

    Faculty of Medicine Al-Mouwasat University Hospital, Damascus University Damascus Syrian Arab Republic.

    Papers in Europe PMC
  6. 06
    Alqatta W3 papers · 2026

    Department of General and Visceral Surgery, Ibn Sina Hospital, Sanaa, Yemen.

    Papers in Europe PMC
  7. 07
    Darwish B3 papers · 2026

    Thoracic Surgery Department Damascus University, Al Mouwasat University Hospital Damascus Syrian Arab Republic.

    Papers in Europe PMC
  8. 08
    Gazzah H3 papers · 2026

    Department of General Surgery, Mohamed Taher Maamouri University Hospital, Nabeul, Tunisia.

    Papers in Europe PMC
  9. 09
    Ghimire SK3 papers · 2026

    National Academy of Medical Sciences, NAMS, Bir Hospital, Department of General Surgery, Kathmandu, Province-3, Nepal.

    Papers in Europe PMC
  10. 10
    Ibrahim B3 papers · 2026

    Faculty of Medicine Al-Mouwasat University Hospital, Damascus University Damascus Syrian Arab Republic.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

6

interventional trials for this specific condition

6 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 11 September 2026

6 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 90.1th percentile).

low confidence · 90.1th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

6 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

16 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

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 2 · after dedupe 2 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 2 · 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).

Uncertain / not reviewed (2)

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 Cystic echinococcosis — 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.

"Cystic echinococcosis" OR "Hydatid cyst" OR "Hydatid disease" OR "Hydatidosis"

Run this search on Europe PMC

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

"Cystic echinococcosis" OR "Hydatid cyst" OR "Hydatid disease" OR "Hydatidosis"

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: 6 interventional · 16 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

Confidence reasoning

  • Preferred label is multi-word and distinctive
  • No synonyms dropped by stoplist
  • No label/synonym collisions with other diseases in this corpus
  • Publication count (23378) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity

Ingested 2026-07-26T13:43:29.519Z