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ORPHA:98819

Familial temporal lobe epilepsy

low confidenceDisorder

Publications

32,628

Trials

49

Interventional, condition-specific

Researchers

1,467

Distinct authors in sample

Gene link

NALCN, SUCO

Limited

Readiness

3/6

Stages with a signal

Clinical definition (Orphanet)

A rare, genetic characterized by mostly benign simple or complex partial with autonomic or psychic auras. occur infrequently, are of short duration and are usually well controlled with medication. Development and cognition are normal.

Orphanet entry

Cross-references

Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.

Additional Mondo synonyms (4)

epilepsy of temporal lobe · epilepsy, familial temporal lobe · familial temporal lobe epilepsy syndrome · temporal lobe epilepsy

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.”

3/6 stages with a signal

An interventional trial matched this condition name on ClinicalTrials.gov — see trials below.

  1. Gene identifiedPresent

    Limited — NALCN, SUCO

  2. LiteraturePresent

    32,628 matched papers (16,740 in last 10 years) Source

  3. Phenotype characterisedNot checked

    Not yet enriched from Monarch / HPO

  4. Animal modelNot checked

    Not yet enriched from Monarch / Alliance

  5. Orphan designationNot checked

    FDA/EMA orphan-drug designation not enriched yet

  6. Interventional trialPresent

    49 matched on ClinicalTrials.gov (21 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?

Possibly — only limited evidence so far for NALCN, SUCO.

GenCC classification: Limited.

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?

32,628

32,628 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=5449) is 41.

32,628 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).

16,740 in the last 10 years · low confidence

Phrase hits: 32,623 · MeSH hits: 100

Open Europe PMC search

Who's working on it?

1,467

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
    Liu Y9 papers · 2026

    Department of Neurology, Guangdong Provincial Key Laboratory of Diagnosis and Treatment of Major Neurological Diseases, National Key Clinical Department and Key Discipline of Neurology, The First Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong Province, China.

    Papers in Europe PMC
  2. 02
    Li Y8 papers · 2026

    Zhongshan School of Medicine, Sun Yat-sen University, Guangzhou, Guangdong, China.

    Papers in Europe PMC
  3. 03
    Chen J7 papers · 2026

    Department of Neurology, Guangdong Provincial Key Laboratory of Diagnosis and Treatment of Major Neurological Diseases, National Key Clinical Department and Key Discipline of Neurology, The First Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong Province, China.

    Papers in Europe PMC
  4. 04
    Chen Z7 papers · 2026

    Department of Neurology, The First Affiliated Hospital of Guangxi Medical University, Nanning, China.

    Papers in Europe PMC
  5. 05
    Zhang J6 papers · 2026

    Department of Neurosurgery, Beijing Tiantan Hospital, Beijing, China.

    Papers in Europe PMC
  6. 06
    Zhang H5 papers · 2026

    Department of Neurology, Guangdong Provincial Key Laboratory of Diagnosis and Treatment of Major Neurological Diseases, National Key Clinical Department and Key Discipline of Neurology, The First Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong Province, China.

    Papers in Europe PMC
  7. 07
    Amlerova J4 papers · 2026

    Department of Neurology, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic(2). Electronic address: jana.amler@gmail.com.

    Papers in Europe PMC
  8. 08
    Bernasconi A4 papers · 2026
    Papers in Europe PMC
  9. 09
    Bernasconi N4 papers · 2026
    Papers in Europe PMC
  10. 10
    Bernhardt BC4 papers · 2026

    Department of Neurology and Neurosurgery, Montreal Neurological Institute and Hospital, McGill University, Montréal, QC, H3A 2B4, Canada.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

49

interventional trials for this specific condition

49 interventional trials matched this specific condition name; 21 currently recruiting in our sample.

Data as of 27 July 2026

49 interventional trials — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 97th percentile).

low confidence · 97th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

Observational and natural-history studies

24 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.

Recruiting or not-yet-recruiting

Open the complete matched search on ClinicalTrials.gov

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 2026-07-26

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.

"Familial temporal lobe epilepsy" OR "epilepsy of temporal lobe" OR "epilepsy of the temporal lobe" OR "epilepsy, familial temporal lobe" OR "familial temporal lobe epilepsy syndrome" OR "temporal lobe epilepsy"

Run this search on Europe PMC

MeSH descriptor terms unioned into the query: Epilepsy, Temporal Lobe

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

"Familial temporal lobe epilepsy" OR "epilepsy of temporal lobe" OR "epilepsy of the temporal lobe" OR "epilepsy, familial temporal lobe" OR "familial temporal lobe epilepsy syndrome" OR "temporal lobe epilepsy" OR "Epilepsy, Temporal Lobe" OR "NALCN" OR "SUCO"

Recall-expansion terms: NALCN, SUCO

Interventional trials matched via: both, phrase, mesh (mesh = registered under a MeSH descriptor no name phrase would catch; recall-expansion = gene / selected parent terms used only for trials).

Study-type breakdown: 49 interventional · 24 observational · 0 expanded access. Only interventional studies enter the trial headline.

Query health: ok — strategies attempted: phrase, mesh, recall-expansion; with hits: phrase, mesh

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 (32628) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity

Ingested 2026-07-27T05:26:33.535Z