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ORPHA:99827

Crimean-Congo hemorrhagic fever

low confidenceDisorder

Also known as: CCHF · Congo fever · Congo hemorrhagic fever · Crimean hemorrhagic fever

Publications

6,697

Trials

7

Interventional, condition-specific

Researchers

1,477

Distinct authors in sample

Gene link

—

Readiness

4/6

Stages with a signal

Clinical definition (Orphanet)

Crimean-Congo hemorrhagic fever (CCHF) is a tick-borne zoonotic disease caused by CCHF virus and characterized by initial fever, headache, and malaise followed by gastrointestinal symptoms and, in severe cases, bleeding, shock, and multi-organ system failure.

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)

Congo-Crimean hemorrhagic fever · Crimean hemorrhagic fever [CHF Congo virus] · Crimean-Congo haemorrhagic fever

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

    6,697 matched papers (4,352 in last 10 years) Source

  3. Phenotype characterisedPresent

    82 HPO annotations (e.g. Increased circulating IgM concentration; Diarrhea; Hematuria) Source

  4. Animal modelNot found

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

  5. Orphan designationPartial

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

  6. Interventional trialPresent

    7 matched on ClinicalTrials.gov (4 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)

82

Associated phenotypes · MONDO:0020501

  • Increased circulating IgM concentration
  • Diarrhea
  • Hematuria
  • Hypertension
  • Hyperhidrosis

Showing 5 of 82 — 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

  • EMA ribavirinTreatment of Crimean-Congo haemorrhagic fever · 21/03/2018 · PositiveEMA designation

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:0020501

Literature

Is anyone studying this?

6,697

6,697 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.

6,697 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).

4,352 in the last 10 years · low confidence

Phrase hits: 6,695 · MeSH hits: 25

Open Europe PMC search

Who's working on it?

1,477

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
    Büyüktuna SA7 papers · 2026

    Department of Infectious Disease and Clinical Microbiology, Sivas Cumhuriyet University School of Medicine, Sivas, Türkiye.

    Papers in Europe PMC
  2. 02
    Hewson R6 papers · 2026

    Infectious & Tropical Diseases, Depts. Immunology & Infection/Pathogen Microbiology, London School of Hygiene & Tropical Medicine, London, UK.

    Papers in Europe PMC
  3. 03
    Wang M6 papers · 2026

    State Key Laboratory of Virology and Biosafety, Wuhan Institute of Virology, Center for Biosafety Mega-Science, Chinese Academy of Sciences, Wuhan 430071, China. Electronic address: wangml@wh.iov.cn.

    Papers in Europe PMC
  4. 04
    Wang X6 papers · 2026

    State Key Laboratory of Virology and Biosafety, Wuhan Institute of Virology, Center for Biosafety Mega-Science, Chinese Academy of Sciences, Wuhan 430071, China. Electronic address: wangxi@wh.iov.cn.

    Papers in Europe PMC
  5. 05
    Groschup MH5 papers · 2026

    Friedrich-Loeffler -Institut, Institute of Novel and Emerging Diseases, Insel Riems, Germany.

    Papers in Europe PMC
  6. 06
    Hensley LE5 papers · 2026

    Zoonotic and Emerging Disease Research Unit, National Bio and Agro-Defense Facility, USDA Agricultural Research Service (ARS), Manhattan, Kansas, United States of America.

    Papers in Europe PMC
  7. 07
    Öksüz C5 papers · 2026

    Clinic of Infectious Diseases and Clinical Microbiology, Ministry of Health Sivas State Hospital, Sivas, Turkiye.

    Papers in Europe PMC
  8. 08
    Papa A5 papers · 2026

    Medical School, Aristotle University of Thessaloniki, 54124 Thessaloniki, Greece.

    Papers in Europe PMC
  9. 09
    Rimoin AW5 papers · 2026

    Department of Epidemiology, Jonathan and Karin Fielding School of Public Health, University of California, Los Angeles, California, United States of America.

    Papers in Europe PMC
  10. 10
    Baysal C4 papers · 2026

    Department of Infectious Diseases and Clinical Microbiology, Sivas Cumhuriyet University Faculty of Medicine, Sivas, Turkiye.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

7

interventional trials for this specific condition

7 interventional trials matched this specific condition name; 4 currently recruiting in our sample. 57 trials are registered for hemorrhagic fever, the broader category — shown separately because they may or may not enrol this specific subtype.

Data as of 11 September 2026

7 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 90.9th percentile).

low confidence · 90.9th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

Broader category: hemorrhagic fever

57

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.

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 16 · after dedupe 16 · already on CT.gov 1 · kept 0 · parent 0 · uncertain 15 · dropped 0 · fetched 2026-07-30

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 (15)

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 Crimean-Congo hemorrhagic fever — 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.

"Crimean-Congo hemorrhagic fever" OR "Congo fever" OR "Congo hemorrhagic fever" OR "Crimean hemorrhagic fever" OR "Congo-Crimean hemorrhagic fever" OR "Crimean hemorrhagic fever [CHF Congo virus]" OR "Crimean-Congo haemorrhagic fever"

Run this search on Europe PMC

MeSH descriptor terms unioned into the query: Hemorrhagic Fever, Crimean

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

"Crimean-Congo hemorrhagic fever" OR "Congo fever" OR "Congo hemorrhagic fever" OR "Crimean hemorrhagic fever" OR "Congo-Crimean hemorrhagic fever" OR "Crimean hemorrhagic fever [CHF Congo virus]" OR "Crimean-Congo haemorrhagic fever" OR "Hemorrhagic Fever, Crimean"

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

Parent-category trials query:

"hemorrhagic fever"

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

Run this search on ClinicalTrials.gov

Synonyms dropped by stoplist: CCHF

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 (6697) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity

Ingested 2026-07-27T06:20:58.505Z