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ORPHA:402823

Hepatitis delta

medium confidenceDisorder

Also known as: HDV · Hepatitis D virus

Publications

15,333

96.3th percentile

Trials

51

Interventional, condition-specific

Researchers

1,692

Distinct authors in sample

Gene link

—

Readiness

3/6

Stages with a signal

Clinical definition (Orphanet)

Hepatitis delta is a rare hepatic disease characterized by variable degrees of acute hepatitis resulting from infection with the hepatitis delta virus. Occasionally it may present a benign course, but most frequently it manifests with severe liver disease that may include fulminant liver failure, hepatic decompensation and rapid progression to cirrhosis. All patients present concomitant hepatitis B virus infection and an increased risk of developing hepatocellular carcinoma has been reported.

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.

Additional Mondo synonyms (5)

Hepatitis D · Hepatitis delta virus caused hepatitis · Hepatitis delta virus hepatitis · hepatitis delta · hepatitis type D

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

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

    15,333 matched papers (7,651 in last 10 years) Source

  3. Phenotype characterisedPresent

    19 HPO annotations (e.g. Cirrhosis; Abdominal pain; Anorexia) Source

  4. Animal modelNot found

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

  5. Orphan designationNot found

    No FDA or EMA orphan-drug designation matched this disease via UMLS or preferred name Source

  6. Interventional trialPresent

    51 matched on ClinicalTrials.gov (8 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)

19

Associated phenotypes · MONDO:0005789

  • Cirrhosis
  • Abdominal pain
  • Anorexia
  • Poor appetite
  • Fulminant hepatitis

Showing 5 of 19 — 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)

No designation matched this disease via UMLS or preferred name on the FDA OOPD mirror or EMA orphan register. Absence here is not proof that none exists under another wording.

Open Targets candidates

21

Drugs / clinical candidates · MONDO_0005789

CTD chemicals (MyDisease.info)

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

  • Hepatitis B Surface Antigens · marker/mechanism

MyDisease.info · MONDO:0005789

Literature

Is anyone studying this?

15,333

15,333 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.

15,333 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).

7,651 in the last 10 years · medium confidence · 96.3th percentile (publications denominator)

Phrase hits: 15,333 · MeSH hits: 275

Open Europe PMC search

Who's working on it?

1,692

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
    Lampertico P17 papers · 2026

    Division of Gastroenterology and Hepatology, Foundation IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.

    Papers in Europe PMC
  2. 02
    Wedemeyer H13 papers · 2026

    D-SOLVE consortium, an EU Horizon Europe funded project (No 101057917), Hannover, Germany.

    Papers in Europe PMC
  3. 03
    Buti M10 papers · 2026

    Liver Unit, Hospital Univesitari Vall d'Hebron, Barcelona, Spain.

    Papers in Europe PMC
  4. 04
    Aleman S7 papers · 2026

    Department of Infectious Diseases, Karolinska University Hospital, Stockholm, Sweden.

    Papers in Europe PMC
  5. 05
    Zoulim F7 papers · 2026

    INSERM Unité Mixte de Recherche 1350, PaThLiv IHU EVEREST, Université Claude-Bernard Lyon 1, 69003 Lyon, France; (A.A.R.S.); (E.B.); (F.Z.); (B.T.); (I.C.)

    Papers in Europe PMC
  6. 06
    Casado M6 papers · 2026

    Pharmacoeconomics & Outcomes Research Iberia (PORIB), Madrid, Spain.

    Papers in Europe PMC
  7. 07
    Degasperi E6 papers · 2026

    Division of Gastroenterology and Hepatology, Foundation IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.

    Papers in Europe PMC
  8. 08
    García F6 papers · 2026

    Hospital Universitario Clínico San Cecilio, Granada, Spain.

    Papers in Europe PMC
  9. 09
    Sandmann L6 papers · 2026

    Department of Gastroenterology, Hepatology, Infectious Diseases and Endocrinology, Hannover Medical School, Hannover, Germany.

    Papers in Europe PMC
  10. 10
    Agarwal K5 papers · 2026

    Institute of Liver Studies, King's College Hospital London, United Kingdom.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

51

interventional trials for this specific condition

51 interventional trials matched this specific condition name; 8 currently recruiting in our sample. 3,367 trials are registered for hepatitis, the broader category — shown separately because they may or may not enrol this specific subtype.

Data as of 11 September 2026

51 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 97.2th percentile).

medium confidence · 97.2th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

Broader category: hepatitis

3,367

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

43 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 80 · after dedupe 78 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 78 · 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 (78)

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 Hepatitis delta — 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.

"Hepatitis delta" OR "Hepatitis D virus" OR "Hepatitis D" OR "Hepatitis delta virus caused hepatitis" OR "Hepatitis delta virus hepatitis" OR "hepatitis type D"

Run this search on Europe PMC

MeSH descriptor terms unioned into the query: Hepatitis D

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

"Hepatitis delta" OR "Hepatitis D virus" OR "Hepatitis D" OR "Hepatitis delta virus caused hepatitis" OR "Hepatitis delta virus hepatitis" OR "hepatitis type D"

Interventional trials matched via: both, 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: 51 interventional · 43 observational · 2 expanded access. Only interventional studies enter the trial headline.

Parent-category trials query:

"hepatitis"

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

Run this search on ClinicalTrials.gov

Synonyms dropped by stoplist: HDV

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

Ingested 2026-07-27T15:33:02.877Z