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ORPHA:157835

Paroxysmal hemicrania

low confidenceDisorder

Publications

1,035

Trials

2

Interventional, condition-specific

Researchers

771

Distinct authors in sample

Gene link

—

Readiness

3/6

Stages with a signal

Clinical definition (Orphanet)

A rare primary headache disorder characterized by multiple attacks of unilateral pain that occur in association with ipsilateral cranial autonomic symptoms. The hallmarks of this syndrome are the relative shortness of the attacks and the complete response to indomethacin therapy.

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.

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

    1,035 matched papers (319 in last 10 years) Source

  3. Phenotype characterisedPresent

    21 HPO annotations (e.g. Migraine; Miosis; Diabetes mellitus) 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

    2 matched on ClinicalTrials.gov (2 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)

21

Associated phenotypes · MONDO:0015529

  • Migraine
  • Miosis
  • Diabetes mellitus
  • Hypertension
  • Neck pain

Showing 5 of 21 — 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

No drugs or clinical candidates returned for this Mondo ID on Open Targets.

CTD chemicals (MyDisease.info)

3 associated chemicals. Therapeutic evidence is listed first when present — not a treatment recommendation.

  • Cabergoline · therapeutic
  • Indomethacin · therapeutic
  • Nitroglycerin · marker/mechanism

MyDisease.info · MONDO:0015529

Literature

Is anyone studying this?

1,035

1,035 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=3967) is 59.

1,035 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).

319 in the last 10 years · low confidence

Phrase hits: 1,035 · MeSH hits: 18

Open Europe PMC search

Who's working on it?

771

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
    Goadsby PJ11 papers · 2025

    Headache Group, Department of Basic and Clinical Neuroscience, King's College London, London, UK. peter.goadsby@kcl.ac.uk.

    Papers in Europe PMC
  2. 02
    May A5 papers · 2022

    Department of Systems Neuroscience, University Medical Center Hamburg-Eppendorf (UKE).

    Papers in Europe PMC
  3. 03
    Zhang P5 papers · 2026

    Department of Neurology, Rutgers Robert University Medical School, New Brunswick, NJ, United States.

    Papers in Europe PMC
  4. 04
    Burish MJ4 papers · 2023

    Department of Neurosurgery, 12340University of Texas Health Science Center at Houston, Houston, TX, USA.

    Papers in Europe PMC
  5. 05
    Lagrata S4 papers · 2023

    From the Headache and Facial Pain Group (S.C., S.K., M.M.), UCL Queen Square Institute of Neurology; The National Hospital for Neurology and Neurosurgery (S.C., F.F., O.P., S.L., S.K., L.Z., M.M., H.A.); Functional Neurosurgery Unit (F.F., O.P., L.Z., H.A.), UCL Queen Square Institute of Neurology; Wellcome Centre for Human Neuroimaging (F.F.), 12 Queen Square; UCL EPSRC Centre for Doctoral Training in Intelligent Integrated Imaging in Healthcare (i4health) (F.F.); Centre for Medical Image Computing (A.P.), University College London; and Department of Medical Physics and Biomedical Engineering (A.P.), University College London, London, UK.

    Papers in Europe PMC
  6. 06
    Matharu M4 papers · 2024

    From the Headache and Facial Pain Group (S.C., S.K., M.M.), UCL Queen Square Institute of Neurology; The National Hospital for Neurology and Neurosurgery (S.C., F.F., O.P., S.L., S.K., L.Z., M.M., H.A.); Functional Neurosurgery Unit (F.F., O.P., L.Z., H.A.), UCL Queen Square Institute of Neurology; Wellcome Centre for Human Neuroimaging (F.F.), 12 Queen Square; UCL EPSRC Centre for Doctoral Training in Intelligent Integrated Imaging in Healthcare (i4health) (F.F.); Centre for Medical Image Computing (A.P.), University College London; and Department of Medical Physics and Biomedical Engineering (A.P.), University College London, London, UK.

    Papers in Europe PMC
  7. 07
    Summ O4 papers · 2025

    Department of Neurology and Research Center of Neurosensory Science, Carl von Ossietzky University Oldenburg, Oldenburg, Germany.

    Papers in Europe PMC
  8. 08
    Wei DY4 papers · 2022

    Headache Group, Department of Basic and Clinical Neuroscience, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK. Diana.wei@kcl.ac.uk.

    Papers in Europe PMC
  9. 09
    Bahra A3 papers · 2024

    Headache Service, National Hospital for Neurology and Neurosurgery, London, UK.

    Papers in Europe PMC
  10. 10
    Burish M3 papers · 2025

    Department of Neurosurgery, University of Texas Health Science Center at Houston, Houston, USA.

    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; 2 currently recruiting in our sample.

Data as of 11 September 2026

2 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 84.5th percentile).

low confidence · 84.5th 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.

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

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 Paroxysmal hemicrania — 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.

"Paroxysmal hemicrania"

Run this search on Europe PMC

MeSH descriptor terms unioned into the query: Paroxysmal Hemicrania

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

"Paroxysmal hemicrania"

Interventional trials matched via: both (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.

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

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 (1035) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity

Ingested 2026-07-27T08:01:20.956Z