ORPHA:178512
Folliculotropic mycosis fungoides
Also known as: Mycosis fungoides-associated follicular mucinosis
Publications
448
76.3th percentile
Trials
4
Interventional, condition-specific
Researchers
899
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
Clinical definition (Orphanet)
A variant of mycosis fungoides (MF) characterized by the presence of folliculotropic infiltrates, often with sparing of the epidermis and preferential involvement of the head and neck region. Most cases show mucinous degeneration of the hair follicles (follicular mucinosis) and are traditionally designated as MF-associated follicular mucinosis.
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:0015808
- UMLS:C1627767
- NCIT:C35685
Additional Mondo synonyms (4)
follicular mucinosis type mycosis fungoides · follicular mycosis fungoides · folliculotropic mycosis fungoides · mycosis fungoides-associated follicular mucinosis
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.”
2/6 stages with a signal
An interventional trial matched this condition name on ClinicalTrials.gov — see trials below.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
448 matched papers (307 in last 10 years) Source
- Phenotype characterisedNot found
No HPO disease–phenotype associations via Monarch for these Mondo IDs
- 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 trialPresent
4 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)
None returned for this Mondo ID. That often means “not linked under this ID,” not “no clinical features.”
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?
448
448 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.
448 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).
307 in the last 10 years · high confidence · 76.3th percentile (publications denominator)
Phrase hits: 448 · MeSH hits: 0
Who's working on it?
899
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.
- 01Vermeer MH11 papers · 2025
Departments of, Department of, Dermatology, Leiden University Medical Center, Leiden, the Netherlands.
Papers in Europe PMC - 02Quint KD10 papers · 2025
Departments of, Department of, Dermatology, Leiden University Medical Center, Leiden, the Netherlands.
Papers in Europe PMC - 03Willemze R9 papers · 2024
Departments of, Department of, Dermatology, Leiden University Medical Center, Leiden, the Netherlands.
Papers in Europe PMC - 04Jansen PM5 papers · 2024
Department of, Pathology, Leiden University Medical Center, Leiden, the Netherlands.
Papers in Europe PMC - 05Ottevanger R5 papers · 2025
Departments of, Department of, Dermatology, Leiden University Medical Center, Leiden, the Netherlands.
Papers in Europe PMC - 06Sokumbi O5 papers · 2026
Section of Dermatopathology, Department of Dermatology, Medical College of Wisconsin, Milwaukee, Wisconsin.
Papers in Europe PMC - 07Duvic M4 papers · 2023
3 Department of Dermatology, University of Texas MD Anderson Cancer Center, Houston, TX, USA.
Papers in Europe PMC - 08Hodak E4 papers · 2022
Rabin Medical Center, Beilinson Hospital, Tel Aviv University, Tel Aviv, Israel.
Papers in Europe PMC - 09Pileri A4 papers · 2026
Division of Dermatology, Department of Experimental, Diagnostic and Specialty Medicine, S. Orsola-Malpighi Hospital, University of Bologna, Bologna, Italy.
Papers in Europe PMC - 10Piraccini BM4 papers · 2026
Division of Dermatology, Department of Experimental, Diagnostic and Specialty Medicine, S. Orsola-Malpighi Hospital, University of Bologna, Bologna, Italy.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
4
interventional trials for this specific condition
4 interventional trials matched this specific condition name; 2 currently recruiting in our sample.
Data as of 11 September 2026
4 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 88.1th percentile).
high confidence · 88.1th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
4 interventional trials matched after quoted-phrase search and title/condition post-filter.
- NCT04930653·RECRUITING·Extracorporeal Photopheresis and Mogamulizumab for the Treatment of Erythrodermic Cutaneous T Cell Lymphoma
Not reviewed·Conditions: Folliculotropic Mycosis Fungoides · Primary Cutaneous T-Cell Non-Hodgkin Lymphoma · Sezary Syndrome · Stage IB Mycosis Fungoides and Sezary Syndrome AJCC v8·Matched via name phrase
- NCT03011814·RECRUITING·Durvalumab With or Without Lenalidomide in Treating Patients With Relapsed or Refractory Cutaneous or Peripheral T Cell Lymphoma
Not reviewed·Conditions: Folliculotropic Mycosis Fungoides · Recurrent Cutaneous T-Cell Non-Hodgkin Lymphoma · Recurrent Mycosis Fungoides · Refractory Cutaneous T-Cell Non-Hodgkin Lymphoma·Matched via name phrase
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 Folliculotropic mycosis fungoides — 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.
"Folliculotropic mycosis fungoides" OR "Mycosis fungoides-associated follicular mucinosis" OR "follicular mucinosis type mycosis fungoides" OR "follicular mycosis fungoides"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Folliculotropic mycosis fungoides" OR "Mycosis fungoides-associated follicular mucinosis" OR "follicular mucinosis type mycosis fungoides" OR "follicular mycosis fungoides"
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: 4 interventional · 0 observational · 0 expanded access. Only interventional studies enter the trial headline.
Query health: ok — strategies attempted: phrase; with hits: phrase
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
Ingested 2026-07-27T08:54:06.102Z