ORPHA:568056
Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome
Also known as: Disseminated warts-impaired cell-mediated immunity-primary lymphedema-anogenital dysplasia syndrome · WILD syndrome
Publications
37
39.2th percentile
Trials
0
Interventional, condition-specific
Researchers
282
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
Clinical definition (Orphanet)
A rare primary lymphedema characterized by extensive, multisegmental lymphedema, associated with persistent, widespread infections with various genital high- and low-risk human papillomaviruses, resulting in multifocal anogenital . Laboratory examination shows abnormalities in lymphocyte subsets, in particular CD4+ T-cells. Epidermal nevi and capillary malformations have also been reported.
How rare: <1 / 1 000 000 — fewer than one in a million. In a city the size of Kolkata, that might mean on the order of fifteen people.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0035473
- UMLS:C5568569
Additional Mondo synonyms (1)
disseminated warts-impaired cell-mediated immunity-primary lymphedema-anogenital dysplasia syndrome
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
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
37 matched papers (26 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 trialPartial
None under the specific name; 453 for broader category lymphedema
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?
37
37 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.
37 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).
26 in the last 10 years · high confidence · 39.2th percentile (publications denominator)
Phrase hits: 37 · MeSH hits: 0
Who's working on it?
282
Distinct author names in 37 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.
- 01Mansour S8 papers · 2024
Molecular and Clinical Sciences Institute, St. George's University of London, London, United Kingdom.
Papers in Europe PMC - 02Gordon K6 papers · 2024
Molecular and Clinical Sciences Institute, St. George's University of London, London, United Kingdom.
Papers in Europe PMC - 03Ostergaard P6 papers · 2024
Molecular and Clinical Sciences Institute, St. George's University of London, London, United Kingdom.
Papers in Europe PMC - 04Hägerling R4 papers · 2023
Mammalian Cell Signaling Laboratory, Max Planck Institute for Molecular Biomedicine, Münster, Germany.
Papers in Europe PMC - 05Kreuter A4 papers · 2023
Department of Dermatology and Allergology, Ruhr-University Bochum, Gudrunstrasse 56, D-44791 Bochum, Germany. a.kreuter@derma.de
Papers in Europe PMC - 06Van Zanten M4 papers · 2023
Molecular and Clinical Sciences Research Institute, St George's University of London, London, UK.
Papers in Europe PMC - 07Wieland U4 papers · 2023
Institute of Virology, University of Cologne, Koeln, Germany. ulrike.wieland@uni-koeln.de
Papers in Europe PMC - 08Jeffery S3 papers · 2023
Molecular and Clinical Sciences Research Institute, St George's, University of London, London, UK.
Papers in Europe PMC - 09Keeley V3 papers · 2023
Lymphedema Clinic, Derby Hospitals NHS Foundation Trust, Derby, UK.
Papers in Europe PMC - 10Mortimer P3 papers · 2023
Molecular and Clinical Sciences Research Institute, St George's University of London, London, UK.
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). 453 trials are registered for lymphedema, 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.
high 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.
453 interventional trials matched lymphedema, the broader category — listed below. Those studies are not counted in the condition-specific total.
Broader category: lymphedema
453
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
- NCT07154043·RECRUITING·Comparison of IPC Therapy as an Alternative or an Adjunct to MLD Within CDT for BCRL
Conditions: Breast Cancer-Related Lymphedema · BCRL·Matched via name phrase
- NCT05366699·RECRUITING·LYMPHA Procedure for the Prevention of Lymphedema After Axillary Lymphadenectomy
Conditions: Lymphedema, Breast Cancer · Lymphedema·Matched via name phrase
- NCT06144164·RECRUITING·A Study of a Comprehensive Prevention Program to Reduce Lymphedema After Axillary Lymph Node Dissection in People With Breast Cancer
Conditions: Lymphedema · Lymphedema Arm · Lymphedema of Upper Arm · Breast Cancer·Matched via name phrase
- NCT07080476·RECRUITING·Effectiveness of Kinesio Taping in Patients With Chronic Breast and/or Truncal Oedema After Treatment for Breast Cancer.
Conditions: Breast Edema · Breast Cancer Related Lymphoedema · Breast Cancer Related Lymphedema · Truncal Lymphedema·Matched via name phrase
- NCT07425379·NOT YET RECRUITING·Prehabilitation in Breast Cancer Surgery
Conditions: Breast Cancer (Early Breast Cancer) · Postoperative Shoulder Dysfunction · Lymphedema Arm · Cancer Rehabilitation·Matched via name phrase
- NCT06324721·RECRUITING·Who and Why do Patients Report Lymphedema After Breast Cancer Treatment Without an Objective Measurable Swelling
Conditions: Breast Cancer · Lymphedema · Sensory Processing Disorder·Matched via name phrase
- NCT07217288·NOT YET RECRUITING·Complete Decongestive Therapy Versus Non-pneumatic Compression Therapy in Post Mastectomy Lymphedema
Conditions: Lymphedema, Breast Cancer · Mastectomy Related Lymphedema · Post Mastectomy Lymphedema·Matched via name phrase
- NCT07613931·RECRUITING·Evaluate Advanced Pneumatic Compression Device With Revised Compression Programming for Lymphedema Treatment
Conditions: Lower Extremity Lymphedema·Matched via name phrase
- NCT06697158·RECRUITING·Investigation of the Effects of Complex Decongestive Physiotherapy on Sleep Quality and Quality of Life in Women With Breast Cancer Related Lymphedema
Conditions: Breast Cancer Related Lymphedema·Matched via name phrase
- NCT07622615·NOT YET RECRUITING·Assessment of the Efficacy of the Dynamic Decongestive System in the Intensive Phase of Lower Limb Lymphedema
Conditions: Lymphedema Lower Extremity·Matched via name phrase
- NCT05918770·NOT YET RECRUITING·Side Effects Screening and Early Intervention to Impact in Quality of Life of Gynaecological Cancer Patients
Conditions: Quality of Life · Gynaecological Cancer · Lymphedema, Lower Limb · Sexual Dysfunction·Matched via name phrase
- NCT06082206·RECRUITING·Pectoral Nerve Block Versus Paravertebral Block In The Incidence of Chronic Pain After Breast Cancer Surgery
Conditions: Paravertebral Block · Pectoral Nerve Block · Chronic Pain · Mastectomy; Lymphedema·Matched via name phrase
- NCT07708662·RECRUITING·Boosted Compression for Lower Limb Chronic Edema
Conditions: Chronic Edema · Lymphedema·Matched via name phrase
- NCT03941756·RECRUITING·Lymphovenous Bypass Procedure Before Underarm Lymph Node Surgery in Preventing Lymphedema in Patients With Inflammatory or Locally Advanced Non-inflammatory Breast Cancer or Melanoma
Conditions: Anatomic Stage III Breast Cancer AJCC v8 · Breast Inflammatory Carcinoma · Locally Advanced Breast Carcinoma · Melanoma·Matched via name phrase
- NCT07365618·NOT YET RECRUITING·Combined Exercise Effects in Breast Cancer-related Lymphedema
Conditions: Breast Cancer-Related Lymphedema·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 16 · after dedupe 16 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 16 · 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 (16)
- isrctn·ISRCTN10930766·Recruiting·Safety, colonisation and immunogenicity following nasal inoculation with genetically modified Neisseria lactamica expressing Factor H binding protein and Neisseria adhesin A - a pilot controlled human infection study
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN15046526·Recruiting·A platform trial for patients with relapsed malignant mesothelioma
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN78231121·No longer recruiting·Testing 123I-ATT001, a new type of targeted radiotherapy, administered directly to the brain tumour of patients in whom the glioblastoma has returned after previous treatment
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN15106165·No longer recruiting·Efficacy of acupuncture in post-COVID fatigue – A randomised controlled pilot study
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN88854487·No longer recruiting·Development and testing of a virtual reality tool to support recovery in people after they have left intensive care
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN14643179·Recruiting·Assessing if stopping and starting standard of care medication for later stage melanoma can reduce the body's resistance to the treatment
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN12351734·No longer recruiting·A study of a new vaccine against Crimean-Congo Haemorrhagic Fever (a life-threatening tick-borne viral disease)
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN53507177·No longer recruiting·Clinical trial studying antibody treatment combined with COVID-19 vaccination in immunocompromised individuals
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN12839469·No longer recruiting·A study to characterize the impact of dietary modification on inavolisib associated hyperglycaemia and to assess the CYP3A4 induction potential of inavolisib using midazolam as a probe substrate in participants with incurable metastatic solid tumours previously treated with multiple (≥2) lines of therapy
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN47717032·No longer recruiting·Blueberry consumption and metabolic syndrome
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN30715190·No longer recruiting·Evaluation of sleep in the genetic condition known as SYNGAP1, in children who have SYNGAP1-related intellectual disability
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN11061442·Recruiting·Can extra tests on cancer samples identify more patients with bowel/colon cancer who should be treated with drugs called anti-EGFR agents?
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN70887063·No longer recruiting·Effect of LIVOGEN, a nutraceutical containing natural bioactive components bergamot extract, artichoke leaf extract, Nigella sativa, EPA, DHA and silybin, on individuals affected by liver steatosis (fatty liver disease)
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN12833814·No longer recruiting·Bergamot and Cardoon extract for liver disease
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN18043777·No longer recruiting·MEK and MET Inhibition in Colorectal Cancer
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN93248876·No longer recruiting·PICCOLO Trial: Panitumumab, Irinotecan & Ciclosporin in COLOrectal cancer therapy
skipped — LLM skipped (--skip-llm)
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 Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome — 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.
"Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome" OR "Disseminated warts-impaired cell-mediated immunity-primary lymphedema-anogenital dysplasia syndrome" OR "WILD syndrome"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome" OR "Disseminated warts-impaired cell-mediated immunity-primary lymphedema-anogenital dysplasia syndrome" OR "WILD syndrome"
Study-type breakdown: 0 interventional · 0 observational · 0 expanded access. Only interventional studies enter the trial headline.
Parent-category trials query:
"lymphedema"
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 2026-07-27T18:29:24.183Z
