Evidence map›Paper›PMID 39176980›Full record

ArticleEpilepsia open2024

Italian report on RARE epilepsies (i-RARE): A consensus on multidisciplinarity.

Antonella Riva, Antonietta Coppola, Francesca Bisulli, Alberto Verrotti, Irene Bagnasco, Maurizio Elia, Francesca Darra, Simona Lattanzi, Stefano Meletti, Angela La Neve and 15 more

Abstract readConsensus Statement
PubMed Full text at PMC Publisher
In one paragraph

Article in Epilepsia open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

  1. Holistic management of epilepsy in adults with intellectual development disorders.Epileptic disorders : international epilepsy journal with videotape · 2026
    Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

25 authors.

Antonella RivaDepartment of Neurosciences Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health (DINOGMI), University of Genoa, Genoa, Italy.ORCID https://orcid.org/0000-0001-9152-5571
Antonietta CoppolaEpilepsy Center, Department of Neuroscience, Odontostomatology and Reproductive Sciences, Federico II University of Naples, Naples, Italy.ORCID https://orcid.org/0000-0002-4845-4293
Francesca BisulliIRCCS Istituto Delle Scienze Neurologiche di Bologna, Full Member of the ERN EpiCARE, Bologna, Italy.ORCID https://orcid.org/0000-0002-1109-7296
Alberto VerrottiDepartment of Pediatrics, University of Perugia, Perugia, Italy.
Irene BagnascoDivision of Neuropsychiatry, Epilepsy Center for Children, Martini Hospital, Turin, Italy.
Maurizio EliaUnit of Neurology and Clinical Neurophysiopathology, Oasi Research Institute-IRCCS, Troina, Italy.
Francesca DarraUnit of Child Neuropsychiatry, Department of Engineering for Innovation Medicine, University of Verona, Full Member of the ERN EpiCARE Verona, Verona, Italy.ORCID https://orcid.org/0000-0002-1062-8438
Simona LattanziNeurological Clinic, Department of Experimental and Clinical Medicine, Marche Polytechnic University, Ancona, Italy.ORCID https://orcid.org/0000-0001-8748-0083
Stefano MelettiNeurophysiology Unit and Epilepsy Centre, OCB Hospital, AOU Modena, Modena, Italy.ORCID https://orcid.org/0000-0003-0334-539X
Angela La NeveDepartment of Basic Medical Sciences, Neurosciences and Sense Organs, University of Bari, Bari, Italy.
Giancarlo Di GennaroIRCCS NEUROMED, Pozzilli, Isernia, Italy.
Isabella BrambillaDravet Italia Onlus, Verona, Italy.ORCID https://orcid.org/0000-0002-9860-8246
Katia SantoroAssociazione Famiglie LGS Italia, Correggio, Italy.
Tommaso PriscoOr.S.A, Treviso, Italy.
Francesca MacariAssociazione Sclerosi Tuberosa, Rome, Italy.
Antonio GambardellaDepartment of Precision Medicine, University of Campania "Luigi Vanvitelli", Naples, Italy.ORCID https://orcid.org/0000-0001-7384-3074
Carlo di BonaventuraDepartment of Human Neurosciences, Policlinico Umberto I, Sapienza University of Rome, Rome, Italy.
Simona BalestriniNeuroscience Department, Meyer Children's Hospital, Florence, Italy.ORCID https://orcid.org/0000-0001-5639-1969
Carla MariniChild Neurology and Psychiatry Unit Children's Hospital "G. Salesi" Azienda Ospedaliero-Universitaria Delle Marche Ancona, Ancona, Italy.ORCID https://orcid.org/0000-0002-9212-2691
Dario PrunaPediatric Neurology and Epileptology Unit, Pediatric Department, ARNAS G. Brotzu/ASL, Cagliari, Italy.
Giuseppe CapovillaChild Neuropsychiatry Department, Epilepsy Center, "C. Poma Hospital", Mantova, Italy.
Nicola SpecchioNeurology, Epilepsy and Movement Disorders Unit, Bambino Gesù Children's Hospital, IRCCS, Full Member of European Reference Network EpiCARE, Rome, Italy.
Giuseppe GobbiAssociazione Famiglie LGS Italia, Correggio, Italy.
Pasquale StrianoDepartment of Neurosciences Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health (DINOGMI), University of Genoa, Genoa, Italy.
iRARE Study Group

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveRare and complex epilepsies encompass a diverse range of disorders characterized by seizures. We aimed to establish a consensus on key issues related to these conditions through collaboration among experienced neurologists, neuropediatricians, and patient advocacy representatives.

methodsEmploying a modified Delphi method, a scientific board comprising 20 physicians and 4 patient advocacy representatives synthesized existing literature with their expertise to formulate statements on contentious topics. A final 32-member expert panel, representing diverse regions of Italy, validated these statements through a two-round voting process, with consensus defined as an average score ≥7.

resultsSixteen statements reached a consensus, emphasizing the necessity for epidemiological studies to ascertain the true prevalence of rare epilepsies. Etiology emerged as a crucial factor influencing therapeutic strategies and outcome prediction, with particular concern regarding prolonged and tonic-clonic seizures. The importance of early implementation of specific drugs and non-pharmacological interventions in the treatment algorithm for developmental and epileptic encephalopathies (DEEs) was underscored. Multidisciplinary care involving experts with diverse skills was deemed essential, emphasizing non-seizure outcomes in adolescence and adulthood. SIGNIFICANCE: This national consensus underscores the imperative for personalized, comprehensive, and multidisciplinary management of rare epilepsies/DEEs. It advocates for increased research, particularly in epidemiology and therapeutic approaches, to inform clinical decision-making and healthcare policies, ultimately enhancing patients' outcomes. PLAIN LANGUAGE SUMMARY: The modified Delphi method is broadly used to evaluate debated topics. In this work, we sought the consensus on integrated and social care in epilepsy management. Both representatives of high-level epilepsy centers and patients' caregivers were directly involved.

Indexed as

Delphi TechniqueEpilepsyRare DiseasesHumansItalyDEEsDelphimanagementmultidisciplinarityrare epilepsies

Identifiers

PMID39176980
PMCPMC11450651

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.