Evidence map›Paper›PMID 41818657›Full record

ArticleNeurology2026

International Consensus on the Evaluation and Management of Hypothalamic Hamartomas: Results From a Modified Delphi Survey.

Nathan T Cohen, Xiaotong Li, Madison M Berl, Chima O Oluigbo, Hiroshi Shirozu, Samuel F Berkovic, Margaret Zacharin, Wirginia Maixner, Andreas Schulze-Bonhage, Kerstin Klotz and 23 more

Abstract readConsensus Statement
In one paragraph

Article in Neurology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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2 · The registry

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3 · Its place in the literature

Who cites it

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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

33 authors.

Nathan T CohenCenter for Neuroscience Research, Children's National Hospital, Washington, DC.ORCID 0000-0002-1410-3487
Xiaotong LiCenter for Neuroscience Research, Children's National Hospital, Washington, DC.ORCID 0009-0003-6535-5048
Madison M BerlCenter for Neuroscience Research, Children's National Hospital, Washington, DC.ORCID 0000-0002-2469-1518
Chima O OluigboCenter for Neuroscience Research, Children's National Hospital, Washington, DC.ORCID 0000-0002-7851-3792
Hiroshi ShirozuFunctional Neurosurgery Center, Department of Neurosurgery, Fukuoka Sanno Hospital, Japan.ORCID 0000-0003-3506-1471
Samuel F BerkovicEpilepsy Research Centre, Department of Medicine, University of Melbourne, Austin Health, Victoria, Australia.ORCID 0000-0003-4580-841X
Margaret ZacharinDepartment of Endocrinology and Diabetes, Murdoch Children's Research Institute, Department of Paediatrics, University of Melbourne, Victoria, Australia.ORCID 0000-0001-5562-6818
Wirginia MaixnerDepartment of Neurosurgery, The Royal Children's Hospital, Melbourne, Australia.
Andreas Schulze-BonhageEpilepsy Center, Medical Center, Member of the ERN EpiCARE, University of Freiburg, Germany.ORCID 0000-0003-2382-0506
Kerstin KlotzDepartment of Pediatric Neurology, University Hospital Bonn, Germany.
Nicola SpecchioClinical and Experimental Neurology, Epilepsy and Movement Disorders Unit, Bambino Gesù Children's Hospital, Full Member of European Reference Network on Rare and Complex Epilepsies, EpiCARE, IRCCS, Rome, Italy.ORCID 0000-0002-8120-0287
Sarah Ferrand-SorbetsPediatric Neurosurgery Department, Rothschild Foundation Hospital, Member of the ERN EpiCARE Paris, France.ORCID 0009-0005-1841-0571
Christine BulteauPediatric Neurosurgery Department, Rothschild Foundation Hospital, Member of the ERN EpiCARE Paris, France.ORCID 0009-0005-5984-9310
Alexis A ArzimanoglouDepartment of Pediatric Clinical Epileptology, Sleep Disorders and Functional Neurology, Member of ERN-EpiCARE, Hospices Civils de Lyon, France.ORCID 0000-0002-7233-2771
Jean RegisInstitut de Neurosciences des Systèmes (INS), UMR1106, Aix-Marseille Université, Marseilles, France.ORCID 0000-0002-4842-3753
J Helen CrossUCL NIHR BRC Great Ormond Street Institute of Child Health, Supporting Partner Centre of ERN-EpiCARE, London, United Kingdom.ORCID 0000-0001-7345-4829
Martin M TisdallDepartment of Neurosurgery, Supporting Partner Centre of ERN-EpiCARE, Great Ormond Street Hospital, London, United Kingdom.ORCID 0000-0001-8880-8386
Hanna RichardsonDepartment of Paediatric Neurodisability, Great Ormond Street Hospital NHS Trust, London, United Kingdom.
Arthur CukiertSão Paulo Epilepsy Clinic, Brazil.ORCID 0000-0002-6563-4149
Cristine CukiertSão Paulo Epilepsy Clinic, Brazil.ORCID 0009-0008-3480-1283
Julia JacobsAlberta Children's Hospital, University of Calgary, Alberta, Canada.ORCID 0000-0003-1164-4699
Elizabeth J DonnerDivision of Neurology, Department of Paediatrics, Hospital for Sick Children, University of Toronto, Ontario, Canada.ORCID 0000-0003-1126-0548
Phillip L PearlDepartment of Neurology, Boston Children's Hospital, Harvard Medical School, MA.ORCID 0000-0002-6373-1068
John F KerriganDivision of Pediatric Neurology, Barrow Neurological Institute at Phoenix Children's Hospital, AZ.ORCID 0000-0002-8470-0690
Angus A WilfongDivision of Pediatric Neurology, Barrow Neurological Institute at Phoenix Children's Hospital, AZ.
Kevin C J YuenBarrow Neurological Institute, University of Arizona College of Medicine and Creighton University School of Medicine, Phoenix.
Dennis J DlugosDepartments of Neurology and Pediatrics, Children's Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania, Philadelphia.ORCID 0000-0003-3088-7645
Daniel CurryTexas Children's Hospital, Baylor College of Medicine, Houston.
Irfan AliSection of Neurology and Developmental Neuroscience, Department of Pediatrics, Texas Children's Hospital, Baylor College of Medicine, Houston.
John RaghebDivision of Neurological Surgery, Brain Institute Nicklaus Children's Hospital, Miami, FL; and.
Lisa SoebyHope for Hypothalamic Hamartomas, Eagle, ID.ORCID 0009-0000-9656-7447
Erica WebsterHope for Hypothalamic Hamartomas, Eagle, ID.ORCID 0009-0002-6947-9083
William D GaillardCenter for Neuroscience Research, Children's National Hospital, Washington, DC.ORCID 0000-0001-5709-0033

Funding

Determining network signatures of pharmacoresistance in focal cortical dysplasia-related epilepsyK23NS131522 · NINDS · CHILDREN'S RESEARCH INSTITUTE · PI Nathan Tyler Cohen · 2025 to 2026
$431k
NINDS NIH HHS K23 NS131522
6 · The paper itself

Abstract

BACKGROUND AND

objectivesHypothalamic hamartomas (HH) are rare brain lesions associated with epilepsy and numerous comorbidities. Worldwide treatment is varied. There is a paucity of high-quality evidence to guide treatment. This study aimed to establish expert consensus on the evaluation and management of HH.

methodsA modified Delphi survey was designed by the Medical Advisory Board of Hope for Hypothalamic Hamartomas and was conducted among 17 International League Against Epilepsy level II epilepsy surgery centers. The survey included 257 questions in round 1 and 81 refined questions in round 2, covering domains of diagnosis, imaging, medical and surgical treatment, neuropsychological and psychiatric evaluation, and care. Consensus was defined as ≥75% agreement using a 9-point Likert scale.

resultsConsensus was achieved on 82% of the questions. Key findings include the following: Diagnosis: Gelastic and dacrystic seizures are strongly associated with HH; 3T epilepsy protocol MRI is essential. Evaluation: Preoperative neuropsychological and endocrinologic assessments are important. Evaluation with further imaging (PET, SPECT, and magnetoencephalography) and intracranial EEG is not useful. Treatment: No consensus was achieved on first-line, second-line, or third-line antiseizure medications (ASMs). Surgical evaluation should begin at the start of the first ASM, with surgery recommended after failure of 2 ASMs. LITT is preferred for Delalande II and III HH. Postoperative care: MRI follow-up at 6-12 months recommended. Preoperative and postoperative cognitive, behavioral, psychosocial, and endocrinologic evaluations are emphasized. Domains: IQ, language, attention, executive function, academic achievement, adaptive function, and behavior (tantrums, rage, anxiety, and depression) are important. DISCUSSION: This Delphi process highlights an international consensus on aspects of HH management. Gelastic/dacrystic seizures are important at diagnosis. A 3T epilepsy protocol MRI is essential. Early epilepsy surgery evaluation is advised. Surgery should be pursued either by disconnective, ablative, or resective techniques. HH location, size, and surgical experience are essential for good outcomes. Postoperative MRI should be obtained 6-12 months and/or if ongoing seizures. Neuropsychological testing should be obtained at baseline, and 6-12 months postsurgically. Findings support a multidisciplinary, protocol-driven approach to optimize outcomes in patients with HH. Areas lacking consensus, such as specific endocrine testing and timing of certain interventions, warrant further research and standardization.

Indexed as

HamartomaHypothalamic DiseasesDelphi TechniqueDisease ManagementEpilepsyHumansMagnetic Resonance Imaging

Identifiers

PMID41818657
PMCPMC13031823

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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.