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ORPHA:3385

African trypanosomiasis

low confidenceDisorder

Also known as: Sleeping sickness

Publications

16,965

Trials

23

Interventional, condition-specific

Researchers

1,129

Distinct authors in sample

Gene link

—

Readiness

4/6

Stages with a signal

Clinical definition (Orphanet)

A rare parasitic disease characterized by infection with the protozoans Trypanosoma brucei rhodesiense (East African trypanosomiasis) or T. brucei gambiense (West African trypanosomiasis), usually due to the bite of an infected tsetse fly. The first, hemolymphatic stage presents with fever, headaches, fatigue, lymphadenopathy, and aching muscles and joints. In East African trypanosomiasis, the fly bite may develop into a red sore or chancre. This form then progresses to CNS invasion with somnolence and other neurologic and psychiatric symptoms within a few weeks, while West African trypanosomiasis slowly progresses within about 3 years. Both forms are fatal if left untreated.

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.

Additional Mondo synonyms (2)

Africam sleeping sickness · sleeping sickness

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

    16,965 matched papers (6,970 in last 10 years) Source

  3. Phenotype characterisedPresent

    88 HPO annotations (e.g. Abnormality of the nervous system; Sleep disturbance; Sleep-wake cycle disturbance) Source

  4. Animal modelNot found

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

  5. Orphan designationPresent

    4 FDA · 1 EMA designations (3 FDA orphan-indication approvals) — e.g. suramin Source

  6. Interventional trialPresent

    23 matched on ClinicalTrials.gov (1 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)

88

Associated phenotypes · MONDO:0005459

  • Abnormality of the nervous system
  • Sleep disturbance
  • Sleep-wake cycle disturbance
  • Cataplexy
  • Pruritus

Showing 5 of 88 — 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)

5

Designations · 3 with FDA orphan-indication approval

  • FDA suraminAfrican Trypanosomiasis · 2021-01-25 · Not FDA Approved for Orphan Indication
  • FDA fexinidazoleAfrican Trypanosomiasis · 2016-04-04 · Not FDA Approved for Orphan Indication
  • FDA Pafuramidine maleateAfrican Trypanosomiasis · 2007-08-31 · Not FDA Approved for Orphan Indication
  • EMA MelarsoprolTreatment of African trypanosomiasis · 08/11/2012 · PositiveEMA designation
  • FDA Eflornithine HCl (Ornidyl)Infection Trypanosoma brucei gambiense Sleeping sickness · 1986-04-23

Sources: FDA OOPD · EMA orphan designations

Open Targets candidates

9

Drugs / clinical candidates · MONDO_0005459

CTD chemicals (MyDisease.info)

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

  • Melarsoprol · therapeutic
  • miltefosine · therapeutic
  • octadecyl-(2-(N-methylpiperidino)ethyl)phosphate · therapeutic
  • pafuramidine · therapeutic
  • Pentamidine · therapeutic
  • Phenylbutazone · therapeutic
  • piclamilast · therapeutic
  • vernodalin · therapeutic

MyDisease.info · MONDO:0005459

Literature

Is anyone studying this?

16,965

16,965 papers — among the better-studied rare conditions, though still a fraction of common-disease literature (breast cancer: over 700,000). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=3967) is 59.

16,965 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).

6,970 in the last 10 years · low confidence

Phrase hits: 16,965 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,129

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
    Camara M13 papers · 2026

    Programme National de Lutte contre la Trypanosomiase Humaine Africaine, Ministère de la Santé, Conakry, Guinea.

    Papers in Europe PMC
  2. 02
    Rock KS12 papers · 2026

    Zeeman Institute for Systems Biology and Infectious Disease Epidemiology Research (SBIDER), University of Warwick, Coventry, United Kingdom.

    Papers in Europe PMC
  3. 03
    Tirados I11 papers · 2026

    Department of Vector Biology, Liverpool School of Tropical Medicine, Pembroke Place, Liverpool, United Kingdom.

    Papers in Europe PMC
  4. 04
    Sutherland SA10 papers · 2026

    Zeeman Institute for Systems Biology and Infectious Disease Epidemiology Research (SBIDER), University of Warwick, Academic Loop Road, CV4 7AL, Coventry, UK.

    Papers in Europe PMC
  5. 05
    Bessell PR9 papers · 2026

    Independent consultant, Edinburgh, United Kingdom.

    Papers in Europe PMC
  6. 06
    Bucheton B9 papers · 2026

    Intertryp, Institut de Recherche pour le Développement, Centre de Coopération Internationale en Recherche Agronomique pour le Développement - University of Montpellier, Montpellier, France.

    Papers in Europe PMC
  7. 07
    Mugenyi A9 papers · 2026

    Ministry of Agriculture, Animal Industry and Fisheries, Kampala, Uganda.

    Papers in Europe PMC
  8. 08
    Torr SJ9 papers · 2026

    Department of Vector Biology, Liverpool School of Tropical Medicine, Liverpool, United Kingdom.

    Papers in Europe PMC
  9. 09
    Crump RE8 papers · 2026

    Zeeman Institute for Systems Biology and Infectious Disease Epidemiology Research (SBIDER), University of Warwick, Academic Loop Road, CV4 7AL, Coventry, UK.

    Papers in Europe PMC
  10. 10
    Hasker E8 papers · 2026

    Department of Public Health, Institute of Tropical Medicine, Antwerp, Belgium.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

23

interventional trials for this specific condition

23 interventional trials matched this specific condition name; 1 currently recruiting in our sample. 5 trials are registered for trypanosomiasis, the broader category — shown separately because they may or may not enrol this specific subtype.

Data as of 11 September 2026

23 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 95.3th percentile).

low confidence · 95.3th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

Broader category: trypanosomiasis

5

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.

Observational and natural-history studies

3 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.

None of the matched observational studies is currently listed as 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 17 · after dedupe 17 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 17 · dropped 0 · fetched 2026-07-29

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 (17)

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 African trypanosomiasis — 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.

"African trypanosomiasis" OR "Sleeping sickness" OR "Africam sleeping sickness"

Run this search on Europe PMC

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

"African trypanosomiasis" OR "Sleeping sickness" OR "Africam sleeping sickness"

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: 23 interventional · 3 observational · 0 expanded access. Only interventional studies enter the trial headline.

Parent-category trials query:

"trypanosomiasis"

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
  • Publication count (16965) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity

Ingested 2026-07-26T23:03:53.539Z