ORPHA:75565
Tropical endomyocardial fibrosis
Also known as: Davies disease · TEMF
Publications
123
40.9th percentile
Trials
0
Interventional, condition-specific
Researchers
403
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
Clinical definition (Orphanet)
Tropical endomyocardial fibrosis is a restrictive cardiopathy, occuring almost exclusively in children and young adults in tropical and subtropical regions, characterized by endocardial fibrosis, affecting the apices and the inflow tract of the right or left ventricle (or both) and manifesting with a restrictive and atrioventricular regurgitation leading to severe pulmonary hypertension, very high systemic venous pressure and congestive cardiac failure. Suspected etiologies include helminth and protozoal infestation and malnutrition.
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:0019158
- UMLS:C2882252
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
Research-stage checklist from open sources (GenCC, literature, Monarch when enriched, ClinicalTrials.gov). Not a prognosis or care recommendation.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
123 matched papers (30 in last 10 years) Source
- Phenotype characterisedPresent
48 HPO annotations (e.g. Fatigue; Decreased QRS voltage; Left ventricular diastolic dysfunction) 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 trialNot found
No matched interventional trial under our ClinicalTrials.gov rules
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)
48
Associated phenotypes · MONDO:0019158
- Fatigue
- Decreased QRS voltage
- Left ventricular diastolic dysfunction
- Pulmonary venous hypertension
- Splenomegaly
Showing 5 of 48 — 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?
123
123 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.
123 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).
30 in the last 10 years · medium confidence · 40.9th percentile (publications denominator)
Phrase hits: 123 · MeSH hits: 0
Who's working on it?
403
Distinct author names in 123 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.
- 01Somers K9 papers · 1977Papers in Europe PMC
- 02D'Arbela PG6 papers · 1977Papers in Europe PMC
- 03Hutt MS6 papers · 1983Papers in Europe PMC
- 04Davies J5 papers · 1983Papers in Europe PMC
- 05Kartha CC5 papers · 1996Papers in Europe PMC
- 06Spry CJ5 papers · 1983Papers in Europe PMC
- 07
- 08Goodwin JF4 papers · 1983Papers in Europe PMC
- 09
- 10Oakley CM4 papers · 1982Papers 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).
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.
See who's working on it — people publishing on this disease are often the practical next contact when no trial is listed.
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 40 · after dedupe 40 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 40 · 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 (40)
- isrctn·ISRCTN34548434·Recruiting·Evaluating the role of IL-17 as an orchestrator of peripheral-central cross talk in depressive symptoms
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN87528895·Recruiting·ROCkeTS GEN V2 Study. Refining Ovarian Cancer Test Accuracy Scores: A test accuracy study to validate new risk scores in postmenopausal women with symptoms of suspected ovarian cancer
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN49174478·Recruiting·HIVEC® HEAT - the drug mitomycin medac will be warmed to 43°C and administered through a catheter into the bladder via HIVEC® device for patients with nonmuscle-invasive bladder cancer that have previously had no response to BCG treatment
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN57136182·Recruiting·Pain in anti-GD2 therapy
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN35339455·No longer recruiting·A study on the impact of the effect of mobile health on airway clearance in patients with primary ciliary dyskinesia
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN10203365·Recruiting·Investigating and optimising physical function with weight loss
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN17297434·Stopped·The acceptance of spectacle lenses designed to manage short-sightedness in children with unequal spectacle prescriptions
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN20591209·No longer recruiting·Vision in children with spectacle lenses designed to manage short-sightedness
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN17828080·Recruiting·Steroid-Reducing Options for ReLapsING PMR (STERLING-PMR)
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN17461473·No longer recruiting·A study to collect data of patients who were diagnosed with periodontal disease
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN17050221·No longer recruiting·Investigating whether a device that provides neuromuscular electrical stimulation can improve nerve function in the legs of people with diabetic neuropathy
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN13438605·No longer recruiting·A trial looking at the effectiveness of combining standard R-ICE chemotherapy with another medicine (polatuzumab vedotin) for patients with diffuse large B cell lymphoma that has either, not responded to or returned, following the first treatment received
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN65858561·No longer recruiting·A clinical trial looking at maintaining hydration at the end of life
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN91141124·Recruiting·What is the most effective hormone treatment for women with premature ovarian insufficiency (POI), in both the short and long-term?
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN15728847·No longer recruiting·PREVENTING PNEUMOcoccal disease through vaccination: PREVENTING PNEUMO 2
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN34705602·No longer recruiting·Can the use of 3D scans of participant's gum health improve their compliance with their oral hygiene regime?
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN14081521·No longer recruiting·Can people with cystic fibrosis safely stop taking some of their nebulised treatments if they are established on the new modulator therapy, Kaftrio?
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN14380378·No longer recruiting·Evaluation of the clinical utility of the FebriDx® test for viral and bacterial upper respiratory infection in a UK A&E department
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN53454974·Recruiting·Real world health outcomes in people with cystic fibrosis after initiation of a new combination treatment
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN11459997·No longer recruiting·Impact of exercise training in combination with dapagliflozin on physical function in adults with type 2 diabetes mellitus
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN12040087·No longer recruiting·Can the Prevail programme for employees and managers improve workplace productivity, decrease sickness absence and reduce stigma due to common mental disorder?
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN45982629·No longer recruiting·Using machine learning in the examination of dental X-rays to detect early tooth decay
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN33433524·Suspended·A randomised control clinical trial of two dental bridges replacing teeth, comparing the two designs, looking at the aesthetics and failure rate of these designs
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN52105758·No longer recruiting·Salivary electro-stimulation for the treatment of dry mouth in patients with Sjogren's syndrome
skipped — LLM skipped (--skip-llm)
- isrctn·ISRCTN16974791·No longer recruiting·Diagnosis and pathology of sport concussion
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 Tropical endomyocardial fibrosis — 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.
"Tropical endomyocardial fibrosis" OR "Davies disease"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Tropical endomyocardial fibrosis" OR "Davies disease"
Study-type breakdown: 0 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
Synonyms dropped by stoplist: TEMF
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 2026-07-27T01:50:30.776Z