ORPHA:141179
Non-involuting congenital hemangioma
Also known as: NICH · Non-involuting congenital haemangioma
Publications
178
58.1th percentile
Trials
0
Interventional, condition-specific
Researchers
755
Distinct authors in sample
Gene link
—
Readiness
3/6
Stages with a signal
Clinical definition (Orphanet)
A rare hemangioma characterized by flat or slightly bossed, round or oval shape, usually solitary, that are fully formed in utero and differ from rapidly involuting hemangiomas (RICH) mainly because they do not undergo a postnatal involuting phase.
How rare: How common this is has not been clearly measured.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0015403
- UMLS:C1275417
- NCIT:C172208
Additional Mondo synonyms (1)
noninvoluting congenital hemangioma
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
No specific-condition interventional trial, but broader-category trials exist — discuss eligibility with a clinician.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
178 matched papers (108 in last 10 years) Source
- Phenotype characterisedPresent
12 HPO annotations (e.g. Perineal hemangioma; Congestive heart failure; Hemangioma) Source
- Animal modelNot found
No Alliance genotype “model of” associations via Monarch for these Mondo IDs
- Orphan designationNot found
No FDA or EMA orphan-drug designation matched this disease via UMLS or preferred name Source
- Interventional trialPartial
None under the specific name; 1 for broader category congenital hemangioma
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)
12
Associated phenotypes · MONDO:0015403
- Perineal hemangioma
- Congestive heart failure
- Hemangioma
- Midfrontal capillary hemangioma
- Telangiectasia of the skin
Showing 5 of 12 — 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)
No CTD chemical associations returned for this Mondo ID.
Literature
Is anyone studying this?
178
178 papers have ever been published on this condition (under this name). For scale, breast cancer has over 700,000. Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=3967) is 59.
178 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).
108 in the last 10 years · medium confidence · 58.1th percentile (publications denominator)
Phrase hits: 178 · MeSH hits: 0
Who's working on it?
755
Distinct author names in 178 sampled papers — named people below.
Who's working on it?
No interventional trial matched this name; these authors publish on it in the sampled literature — a practical starting point for contact.
- 01Mulliken JB11 papers · 2026
Division of Plastic Surgery, Children's Hospital, Harvard Medical School, Boston, Massachusetts 02115, USA. john.mulliken@tch.harvard.edu
Papers in Europe PMC - 02Bischoff J6 papers · 2025
Vascular Biology Program and Department of Surgery, Children's Hospital Boston, Harvard Medical School, Boston, Massachusetts, USA.
Papers in Europe PMC - 03Kozakewich HP6 papers · 2024
Vascular Anomalies Center, Boston Children's Hospital, Boston, MA 02115, USA; Department of Pathology, Boston Children's Hospital, Boston, MA 02115, USA.
Papers in Europe PMC - 04Enjolras O5 papers · 2007
Consultations des angiomes, service du Professeur-Marie-Paule-Vazquez, hôpital d'enfants Armand-Trousseau, Inserm U714, université Paris-VI, Assistance-publique-Hôpitaux de Paris, 75571 Paris cedex 12, France. secretariat.enjolras@trs.aphp.fr
Papers in Europe PMC - 05Li Y5 papers · 2026
Division of Oncology, Department of Pediatric Surgery, West China Hospital of Sichuan University, Chengdu, 610041, China.
Papers in Europe PMC - 06Boon LM4 papers · 2017
Laboratory of Human Molecular Genetics, de Duve Institute, University of Louvain (UCL), Brussels, Belgium.
Papers in Europe PMC - 07
- 08Soupre V4 papers · 2020
Pediatric Maxillo-Facial and Plastic Surgery (O.B., V.S., A.P., O.N.), Necker Children's Hospital, Descartes University, Paris, France.
Papers in Europe PMC - 09Al-Ibraheemi A3 papers · 2024
Department of Pathology, Boston Children's Hospital, Harvard Medical School, 300 Longwood Avenue, Boston, MA, 02115, USA. Alyaa.Al-Ibraheemi@Childrens.Harvard.edu.
Papers in Europe PMC - 10Boscolo E3 papers · 2023
Vascular Biology Program and Department of Surgery, Children's Hospital Boston, Harvard Medical School, Boston, Massachusetts, USA.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
0
interventional trials for this specific condition
No interventional trial testing a treatment matched this specific condition name on ClinicalTrials.gov (observational studies and pan-disease registries are listed separately when present). 1 trial are registered for congenital hemangioma, the broader category — shown separately because they may or may not enrol this specific subtype.
Data as of 11 September 2026 · last trial check 11 September 2026
No matched interventional trials. This is true for 77.2% of diseases in the trials denominator (5501 of 7126). Here are the researchers publishing on it.
medium confidence · 38.6th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
No interventional trial testing a treatment was found for this specific condition name on ClinicalTrials.gov.
1 interventional trial matched congenital hemangioma, the broader category — listed below. Those studies are not counted in the condition-specific total.
Broader category: congenital hemangioma
1
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.
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 Non-involuting congenital hemangioma — check Associations / patient organisations on that page.
India — NPRD
Last verified 2026-07-26This 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.
"Non-involuting congenital hemangioma" OR "Non-involuting congenital haemangioma" OR "noninvoluting congenital hemangioma"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Non-involuting congenital hemangioma" OR "Non-involuting congenital haemangioma" OR "noninvoluting congenital hemangioma"
Study-type breakdown: 0 interventional · 0 observational · 0 expanded access. Only interventional studies enter the trial headline.
Parent-category trials query:
"congenital hemangioma"
Query health: ok — strategies attempted: phrase; with hits: phrase
Run this search on ClinicalTrials.gov
Synonyms dropped by stoplist: NICH
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 2026-07-27T07:54:53.031Z