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ORPHA:280062

Calciphylaxis

low confidenceDisorder

Publications

3,716

Trials

13

Interventional, condition-specific

Researchers

1,068

Distinct authors in sample

Gene link

—

Readiness

4/6

Stages with a signal

Clinical definition (Orphanet)

A rare vascular calcification disorder typically characterized by occlusion of microvessels in the cutaneous tissue resulting in painful cutaneous lesions. The disorder is often life-limiting.

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.”

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

    3,716 matched papers (1,997 in last 10 years) Source

  3. Phenotype characterisedPresent

    13 HPO annotations (e.g. Secondary hyperparathyroidism; Cutis marmorata; Abnormality of metabolism/homeostasis) Source

  4. Animal modelNot found

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

  5. Orphan designationPresent

    5 FDA · 4 EMA designations (5 FDA orphan-indication approvals) — e.g. hexasodium phytate Source

  6. Interventional trialPresent

    13 matched on ClinicalTrials.gov (6 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)

13

Associated phenotypes · MONDO:0017215

  • Secondary hyperparathyroidism
  • Cutis marmorata
  • Abnormality of metabolism/homeostasis
  • Ectopic ossification
  • Cellulitis

Showing 5 of 13 — 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)

9

Designations · 5 with FDA orphan-indication approval

  • FDA hexasodium phytateCalciphylaxis · 2012-12-02 · Not FDA Approved for Orphan Indication
  • FDA sodium thiosulfateCalciphylaxis · 2012-11-19 · Not FDA Approved for Orphan Indication
  • FDA menaquinoneCalciphylaxis · 2012-09-04 · Not FDA Approved for Orphan Indication
  • FDA Sodium ThiosulfateCalciphylaxis · 2012-02-16 · Not FDA Approved for Orphan Indication
  • FDA sodium thiosulfateCalciphylaxis · 2011-11-09 · Not FDA Approved for Orphan Indication
  • EMA recombinant human ectonucleotide pyrophosphatase/phosphodiesterase 1 fused to the Fc fragment of IgG1Treatment of calciphylaxis · 22/05/2025 · PositiveEMA designation
  • EMA Hexasodium phytateTreatment of calciphylaxis · 17/07/2012 · PositiveEMA designation
  • EMA sodium thiosulfateTreatment of calciphylaxis · 02/04/2012 · 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)

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

  • Anticoagulants · therapeutic
  • futibatinib · marker/mechanism
  • Lupus Coagulation Inhibitor · marker/mechanism

MyDisease.info · MONDO:0017215

Literature

Is anyone studying this?

3,716

3,716 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.

3,716 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).

1,997 in the last 10 years · low confidence

Phrase hits: 3,716 · MeSH hits: 95

Open Europe PMC search

Who's working on it?

1,068

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
    Nigwekar SU12 papers · 2026

    Department of Nephrology, Massachusetts General Hospital, Boston, Massachusetts.

    Papers in Europe PMC
  2. 02
    Wang N7 papers · 2026

    Wound and Ostomy Care Center, Outpatient Department, Gansu Provincial Hospital, Lanzhou, Gansu, People's Republic of China.

    Papers in Europe PMC
  3. 03
    Lu S6 papers · 2026

    Department of Nephrology, the First Affiliated Hospital of Nanjing Medical University, Jiangsu Province Hospital, Nanjing, Jiangsu, China.

    Papers in Europe PMC
  4. 04
    Hu J5 papers · 2026

    Department of Geriatrics, Division of Nephrology, the First Affiliated Hospital with Nanjing Medical University, Jiangsu Province Hospital, Nanjing, China.

    Papers in Europe PMC
  5. 05
    Li C5 papers · 2026

    Department of Geriatrics, Division of Nephrology, the First Affiliated Hospital with Nanjing Medical University, Jiangsu Province Hospital, Nanjing, China.

    Papers in Europe PMC
  6. 06
    Liu J5 papers · 2026

    State Key Laboratory of Reproductive Medicine and Offspring Health, Center of Clinical Reproductive Medicine, the First Affiliated Hospital with Nanjing Medical University, Jiangsu Women and Children Health Hospital, Nanjing, China.

    Papers in Europe PMC
  7. 07
    Qin L5 papers · 2026

    State Key Laboratory of Reproductive Medicine and Offspring Health, Center of Clinical Reproductive Medicine, the First Affiliated Hospital with Nanjing Medical University, Jiangsu Women and Children Health Hospital, Nanjing, China.

    Papers in Europe PMC
  8. 08
    Ye X5 papers · 2026

    Department of Nephrology, the First Affiliated Hospital of Nanjing Medical University, Jiangsu Province Hospital, Nanjing, Jiangsu, China.

    Papers in Europe PMC
  9. 09
    Zeng M5 papers · 2026

    Department of Nephrology, the First Affiliated Hospital with Nanjing Medical University, Jiangsu Province Hospital, Nanjing, China.

    Papers in Europe PMC
  10. 10
    Zhang L5 papers · 2026

    Department of Nephrology, China-Japan Friendship Hospital, Beijing, China.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

13

interventional trials for this specific condition

13 interventional trials matched this specific condition name; 6 currently recruiting in our sample.

Data as of 11 September 2026

13 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 93.5th percentile).

low confidence · 93.5th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

Observational and natural-history studies

10 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 6 · after dedupe 6 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 6 · 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 (6)

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 Calciphylaxis — 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.

"Calciphylaxis"

Run this search on Europe PMC

MeSH descriptor terms unioned into the query: Calciphylaxis

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

"Calciphylaxis"

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: 13 interventional · 10 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 short or not clearly distinctive
  • No synonyms dropped by stoplist
  • No label/synonym collisions with other diseases in this corpus
  • Publication count (3716) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity

Ingested 2026-07-27T11:49:07.608Z