ORPHA:33543
Kleine-Levin syndrome
Publications
870
87.7th percentile
Trials
1
Interventional, condition-specific
Researchers
810
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
Clinical definition (Orphanet)
Kleine-Levin syndrome (KLS) is a rare neurological disorder of unknown origin characterised by relapsing-remitting episodes of hypersomnia in association with cognitive and behavioural disturbances.
How rare: 1-9 / 1 000 000 — roughly one to nine people per million. In a city the size of Kolkata, perhaps a few dozen.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0007863
- MeSH:D017593
- OMIM:148840
- UMLS:C0206085
- NCIT:C84800
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
870 matched papers (388 in last 10 years) Source
- Phenotype characterisedNot checked
Not yet enriched from Monarch / HPO
- Animal modelNot checked
Not yet enriched from Monarch / Alliance
- Orphan designationNot checked
FDA/EMA orphan-drug designation not enriched yet
- Interventional trialPresent
1 matched on ClinicalTrials.gov
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)
Not enriched in this build — Monarch phenotype joins were not run for this record.
Animal models (Monarch / Alliance)
Not enriched in this build.
Literature
Is anyone studying this?
870
870 papers have been published on this condition. That is a real research literature — still far smaller than common diseases (breast cancer: over 700,000 papers). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=5449) is 41.
870 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 41 (publications denominator n=5449).
388 in the last 10 years · high confidence · 87.7th percentile (publications denominator)
Phrase hits: 870 · MeSH hits: 0
Who's working on it?
810
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.
- 01Dauvilliers Y50 papers · 2026
National Reference Centre for Orphan Diseases, Narcolepsy, Idiopathic Hypersomnia, Sleep Unit, Department of Neurology, Gui-de-Chauliac Hospital, CHU Montpellier, University of Montpellier, INM INSERM, Montpellier, France.
Papers in Europe PMC - 02Barateau L39 papers · 2026
National Reference Center for Orphan Diseases, Narcolepsy, Idiopathic Hypersomnia and Kleine-Levin Syndrome, Department of Neurology, Gui-de-Chauliac Hospital, Centre Hospitalier Universitaire (CHU) de Montpellier, Montpellier, France.
Papers in Europe PMC - 03Plazzi G18 papers · 2026
IRCCS, Istituto delle Scienze Neurologiche di Bologna, UOC Clinica Neurologica, Bologna, Italy.
Papers in Europe PMC - 04Arnulf I16 papers · 2026
Service des pathologies du sommeil, Centre National de Reference des Hypersomnies Rares, Hôpitaux Universitaires Pitié-Salpêtrière, Sorbonne Université, 47-83 boulevard de l'Hôpital, 75651 Paris Cedex 13, France. Electronic address: isabelle.arnulf@aphp.fr.
Papers in Europe PMC - 05Chenini S16 papers · 2026
Sleep-Wake Disorders Unit, Department of Neurology, Gui-de-Chauliac Hospital, CHU, Montpellier, France.
Papers in Europe PMC - 06Jaussent I16 papers · 2026
Institute for Neurosciences of Montpellier (INM), University of Montpellier, INSERM, Montpellier, France.
Papers in Europe PMC - 07Pizza F15 papers · 2026
Department of Biomedical and Neuromotor Sciences (DIBINEM), University of Bologna, Bologna, Italy.
Papers in Europe PMC - 08Lecendreux M13 papers · 2025
AP-HP, Pediatric Sleep Center, CHU Robert-Debré, Paris, France.
Papers in Europe PMC - 09Leu-Semenescu S8 papers · 2025
From the Sleep Disorders Unit (A.L., E.G., C.C., S.L.-S., I.A.), National Reference Center for Narcolepsy, Hypersomnia and Kleine-Levin Syndrome, Brain Research Institute (CRICM, UPMC, Paris 6; Inserm UMR_S 975; CNRS UMR 7225), Sorbonne University Paris; Sleep Medicine and Respiratory Disease Center (L.P.-D.), Competence Center for Narcolepsy, Hypersomnia and Kleine-Levin Syndrome, Hospices Civils de Lyon, France; and Center for Investigation and Research in Sleep (A.O.R.), Lausanne University Hospital and Lausanne University, Switzerland.
Papers in Europe PMC - 10Lopez R8 papers · 2026
Department of Neurology, Sleep-Wake Disorders Center, Hôpital Gui-de-Chauliac, Montpellier, France; National Reference Network for Narcolepsy, Montpellier, France.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
1
interventional trials for this specific condition
1 interventional trial matched this specific condition name; none in our sample are currently recruiting.
Data as of 27 July 2026
1 interventional trial — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 76.8th percentile).
high confidence · 76.8th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
1 interventional trials matched after quoted-phrase search and title/condition post-filter.
No currently recruiting studies in the matched set. Open the same search on ClinicalTrials.gov.
Observational and natural-history studies
1 observational study matches 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.
General rare disease registries you may be eligible for
These studies enroll across many rare conditions. They are not counted as evidence that anyone is studying this specific disease.
- NCT01793168·RECRUITING·Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford
Conditions: Rare Disorders · Undiagnosed Disorders · Disorders of Unknown Prevalence · Cornelia De Lange Syndrome
Where to find support
We do not yet link condition-specific patient organisations. These umbrella groups support undiagnosed and ultra-rare families:
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.
"Kleine-Levin syndrome"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Kleine-Levin syndrome"
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: 1 interventional · 1 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 2026-07-26T23:37:19.564Z