Neurology最新文献

{"title":"International Consensus on the Evaluation and Management of Hypothalamic Hamartomas: Results From a Modified Delphi Survey.","authors":"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,Nicola Specchio,Sarah Ferrand-Sorbets,Christine Bulteau,Alexis A Arzimanoglou,Jean Regis,J Helen Cross,Martin M Tisdall,Hanna Richardson,Arthur Cukiert,Cristine Cukiert,Julia Jacobs,Elizabeth J Donner,Phillip L Pearl,John F Kerrigan,Angus A Wilfong,Kevin C J Yuen,Dennis J Dlugos,Daniel Curry,Irfan Ali,John Ragheb,Lisa Soeby,Erica Webster,William D Gaillard","doi":"10.1212/wnl.0000000000214760","DOIUrl":"https://doi.org/10.1212/wnl.0000000000214760","url":null,"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.DISCUSSIONThis 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.","PeriodicalId":19256,"journal":{"name":"Neurology","volume":"109 1","pages":"e214760"},"PeriodicalIF":9.9,"publicationDate":"2026-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147439498","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Early Clinical and EEG Association of Genotype and Outcome in Genetic Epilepsies: A Cohort Study and Hierarchical Clustering Analysis.","authors":"Angela De Dominicis,Mattia Mercier,Giusy Carfi Pavia,Ludovica Maria Piscitello,Simona Cappelletti,Cristina Filosomi,Cinzia Correale,Costanza Calabrese,Luca De Palma,Antonio Novelli,Fabrizia Stregapede,Marina Trivisano,Nicola Specchio","doi":"10.1212/wnl.0000000000214761","DOIUrl":"https://doi.org/10.1212/wnl.0000000000214761","url":null,"abstract":"BACKGROUND AND OBJECTIVESGenetic epilepsies include a broad spectrum of disorders caused by pathogenic variants in more than 1,000 genes. Their clinical expression is highly variable, making early phenotype-genotype interpretation challenging. Early seizure semiology and EEG features may offer clinically useful information for diagnostic orientation and management. The aim of this study was to characterize early clinical and EEG features in patients with genetic epilepsies, examine their associations with outcomes, and explore genotype-phenotype groupings through hierarchical clustering analysis (HCA).METHODSWe conducted a retrospective study at Bambino Gesù Children's Hospital. Eligible participants carried pathogenic or likely pathogenic variants in epilepsy-related genes, identified through medical records and laboratory diagnostic logs. Clinical variables at seizure onset and EEG recordings performed within the first month of the initial seizure were extracted. Follow-up outcomes included seizure frequency, drug resistance, movement disorders, behavioral/autism spectrum disorder comorbidities, and developmental delay/intellectual disability (DD/ID). Associations between early features and outcomes were assessed using χ2 or Fisher tests. HCA was used to identify clusters linking early phenotype and gene-level etiology.RESULTSWe included 277 patients (52.3% female; median age at last follow-up 8.1 years, range 0-40). Drug resistance occurred in 58.8% and severe DD/ID in 35.4% of patients. EEG data at onset were available for 107 individuals. Neonatal onset was associated with a higher rate of drug resistance (71.4%; odds ratio [OR] 2.0, 95% CI 1.05-3.77), movement disorders (60.7%; OR 3.7, 95% CI 2.02-6.82), and severe DD/ID (71.4%; OR 7.0, 95% CI 3.66-13.49). Slow EEG background activity and multifocal epileptiform discharges were associated with both drug resistance and severe DD/ID. HCA identified genotype-phenotype groupings, including clusters involving SCN1A, PRRT2, STXBP1, KCNQ2, SCN2A, CHD2, SYNGAP1, and MECP2, each linked to specific clinical and EEG features.DISCUSSIONEarly clinical and EEG features showed meaningful associations with outcomes and mapped onto specific genetic etiologies. HCA revealed coherent genotype-phenotype clusters that may support early diagnostic reasoning. Limitations include the retrospective design and small numbers per gene, warranting larger multicenter studies for validation.","PeriodicalId":19256,"journal":{"name":"Neurology","volume":"127 1","pages":"e214761"},"PeriodicalIF":9.9,"publicationDate":"2026-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147439497","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Prevalence and Relative Proportions of Multiple Sclerosis, Neuromyelitis Optica Spectrum Disorder, and Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease in the Republic of Korea.","authors":"Su-Hyun Kim,Eun-Jae Lee,Young-Min Lim,Hyunjin Kim,Ju-Hong Min,Seung Ho Choo,Byoung Joon Kim,Sung-Min Kim,Dong Seok Ohn,Ha Young Shin,Ki Hoon Kim,Young Nam Kwon,Seung Woo Kim,Jun-Soon Kim,Woojun Kim,Eunhee Sohn,Sooyoung Kim,Jin Myoung Seok,Tai-Seung Nam,You-Ri Kang,Minsu Park,Kyong Jin Shin,Byung-Jo Kim,Seol-Hee Baek,Jin-Woo Park,Sun-Young Oh,Young Eun Park,Yoon-Ho Hong,Suk-Won Ahn,Woohee Ju,Jeeyoung Oh,Hye Lim Lee,Tae-Kyeong Lee,Byeong-Jun Jeon,Nam-Hee Kim,Sunyoung Kim,Soonwook Kwon,Byeol-A Yoon,Jong Kuk Kim,Jinseok Park,Jeong Bin Bong,Eun Bin Cho,Yoo Hwan Kim,Jong Seok Bae,Seong-Il Oh,Yoon Sung Sang,Jiwon Yang,Do-Hyung Kim,Jee-Eun Kim,Juhyeon Kim,Hyun-June Shin,Ohyun Kwon,Ahwon Kim,Sa-Yoon Kang,Jung Im Seok,Minsung Kang,Joo Hye Sung,Hung Youl Seok,Jin-Hong Shin,Jae-Hwan Choi,Dae-Seong Kim,Je Hong Min,In Soo Joo,Jungmin So,Jae-Won Hyun,Ho Jin Kim","doi":"10.1212/wnl.0000000000214792","DOIUrl":"https://doi.org/10.1212/wnl.0000000000214792","url":null,"abstract":"OBJECTIVESTo provide the clinically validated, nationwide estimates of multiple sclerosis (MS), neuromyelitis optica spectrum disorder (NMOSD), and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) in Korea, and to describe their relative proportions.METHODSFrom January to March 2025, 47 referral hospitals participating in a nationwide hospital-based registry identified actively followed patients with MS, NMOSD, or MOGAD. Diagnoses followed international criteria, and antibody status was confirmed using validated CBAs. Actively followed patients had ≥1 outpatient visit in the prior 6 months. Centers provided demographics, treatments, and Expanded Disability Status Scale. Prevalence used national population data.RESULTSA total of 4,196 patients were identified, 1,799 MS, 1,616 NMOSD, and 781 MOGAD (ratio 2.3:2.1:1). Mean age at onset was 33.4 ± 12.0 years for MS, 42.7 ± 14.7 for NMOSD, and 41.7 ± 17.8 for MOGAD, and the female-to-male ratios were 2.2:1 for MS, 5.1:1 for NMOSD (6.5:1 in aquaporin-4-IgG positive cases), and 1.5:1 for MOGAD. Crude prevalence estimates were 3.48, 3.13, and 1.51 per 100,000, respectively.DISCUSSIONThis nationwide registry demonstrates a distinctive Korean CNS inflammatory demyelinating disease profile, with a relatively higher proportion of NMOSD and MOGAD reflecting the low prevalence of MS in East Asia.","PeriodicalId":19256,"journal":{"name":"Neurology","volume":"13 1","pages":"e214792"},"PeriodicalIF":9.9,"publicationDate":"2026-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147439494","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Teaching NeuroImage: Giant Cavernous Sinus Hemangioma With Sellar Extension.","authors":"Weiwei Liao","doi":"10.1212/wnl.0000000000214799","DOIUrl":"https://doi.org/10.1212/wnl.0000000000214799","url":null,"abstract":"","PeriodicalId":19256,"journal":{"name":"Neurology","volume":"26 1","pages":"e214799"},"PeriodicalIF":9.9,"publicationDate":"2026-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147439499","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Sport-Related Head Exposure Characteristics and Health Outcomes in Former Collegiate Athletes: A CARE Consortium Study.","authors":"Adrian J Boltz,Landon B Lempke,Reid Syrydiuk,Allyssa K Memmini,Chengyun Li,Jie Ren,Susan M Perkins,Jaroslaw Harezlak,Kelly M Mosesso,Paul F Pasquina,Thomas W McAllister,Michael A McCrea,Steven P Broglio, ","doi":"10.1212/wnl.0000000000214783","DOIUrl":"https://doi.org/10.1212/wnl.0000000000214783","url":null,"abstract":"BACKGROUND AND OBJECTIVESSport-related head exposure characteristics (i.e., concussion history, sport contact classification, and total years of sport participation) are suggested to be associated with short-term and long-term health outcomes in competitive athletes. However, their relationship with intermediate health outcomes (specifically within 5 years of collegiate sport retirement) remains unknown. Therefore, we examined associations between sport-related head exposure characteristics and physical, mental, cognitive, and behavioral health measures among former collegiate athletes.METHODSFormer collegiate athletes who completed a baseline evaluation between 2018 and 2021 and were evaluated within 5 years of collegiate graduation were included. Primary predictors included lifetime concussion history (0 [referent], 1-2, 3+), sport contact classification (unexposed [ref.], low, high), and total years of sport participation (continuous). Outcome measures collected included the Alcohol Use Disorders Identification Test, Brief Symptom Inventory-18 (BSI-18), Neuro-Quality of Life cognitive domain (Neuro-QoL), Patient Health Questionnaire (PHQ-9), Pittsburgh Sleep Quality Index (PSQI), Sport Concussion Assessment Tool (SCAT) symptom inventory, 12-Item Short Form Survey (SF-12), and Satisfaction with Life Scale. Twelve multivariable linear regression models with bootstrapping were constructed, with adjusted unstandardized beta coefficients (BAdj) and standard errors (SEs) estimated.RESULTSOverall, 3,910 former collegiate student-athletes were examined; 48.6% were female, 73.0% attended a Division I school, 36.2% self-reported ≥1 lifetime diagnosed concussion, 38.1% participated in a high-exposure sport, and the median years since college graduation to assessment was 5.0. Independently, scores of BSI anxiety (BAdj = 1.24, SE = 0.36), BSI depression (BAdj = 0.88, SE = 0.37), global severity index [GSI] (BAdj = 2.66, SE = 0.91), PHQ-9 (BAdj = 1.34, SE = 0.40), PSQI (BAdj = 0.69, SE = 0.29), SCAT total symptom severity (BAdj = 5.14, SE = 1.31), and SF-12 mental composite score (BAdj = -3.39, SE = 0.83) were worse in athletes with 3+ concussions compared with athletes without a history of concussion. Athletes with 1-2 concussions vs no concussion history similarly had worse scores independently for BSI-18 GSI (BAdj = 0.88, SE = 0.35), anxiety (BAdj = 0.40, SE = 0.15), Neuro-QoL (BAdj = -0.97, SE = 0.36), PHQ-9 (BAdj = 0.77, SE = 0.19), PSQI (BAdj = 0.27, SE = 0.13), SCAT total symptom severity (BAdj = 2.13, SE = 0.55), and SF-12 mental composite score (BAdj = -1.80, SE = 0.41).DISCUSSIONLifetime concussion history was the most common predictor of adverse self-reported health outcomes compared with other exposure characteristics, within 5 years of collegiate sport retirement. Despite the associations, most former athletes remained within normal clinical levels during this early postretirement period.","PeriodicalId":19256,"journal":{"name":"Neurology","volume":"7 1","pages":"e214783"},"PeriodicalIF":9.9,"publicationDate":"2026-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147393834","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Wearable Technology and Its Role in Neurologic Care: Emerging Issues in Neurology.","authors":"Sarah M Benish,Daniel Friedman,Sara Merchant,Mia T Minen,Erik K St Louis,Anup D Patel","doi":"10.1212/wnl.0000000000214802","DOIUrl":"https://doi.org/10.1212/wnl.0000000000214802","url":null,"abstract":"Consumer wearable devices are commonly used by patients and consumers for several reasons with increasing application as new technologies are developed. Use of these devices is an emerging issue in Neurology because of increased adoption and the additional data reported to providers by patients. Understanding of possible functions, limitations, and effect on patients of non-US Food and Drug Administration (FDA)-cleared wearable technology to inform neurologic care is needed. A common theme in people with neurologic conditions regarding consumer wearables and associated tracking applications is that there is significant promise in these tools, but adherence (days per use/per week), continued engagement (attrition), and unintended consequences such as heightened anxiety remain important issues. Further understanding and validation of these devices is needed within the field of Neurology before full use and confidence can be achieved. Below, we provide examples of non-FDA-cleared wearable devices used in Neurology in the areas of epilepsy, headache, cardiac monitoring, and sleep.","PeriodicalId":19256,"journal":{"name":"Neurology","volume":"75 1","pages":"e214802"},"PeriodicalIF":9.9,"publicationDate":"2026-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147393835","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Teaching NeuroImage: Rheumatoid Vasculitis With Necrotizing Myositis.","authors":"Andriana Charalampopoulou, Ahmet Hoke, Arens Taga","doi":"10.1212/WNL.0000000000214717","DOIUrl":"https://doi.org/10.1212/WNL.0000000000214717","url":null,"abstract":"","PeriodicalId":19256,"journal":{"name":"Neurology","volume":"106 5","pages":"e214717"},"PeriodicalIF":8.5,"publicationDate":"2026-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146150320","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Tau Biomarker-Based Diagnosis of Alzheimer Disease and the Anti-Abeta Therapeutic Window: Is There Overlap?","authors":"Peter T Nelson, Gregory A Jicha","doi":"10.1212/WNL.0000000000214696","DOIUrl":"https://doi.org/10.1212/WNL.0000000000214696","url":null,"abstract":"","PeriodicalId":19256,"journal":{"name":"Neurology","volume":"106 5","pages":"e214696"},"PeriodicalIF":8.5,"publicationDate":"2026-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146106608","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Association of [¹⁸F]Flortaucipir-PET and Plasma p-Tau217 With Tau Neuropathology in Alzheimer Disease and Other Neurodegenerative Disorders.","authors":"Agathe Vrillon, Salvatore Spina, Jhony Mejía-Pérez, Tia Lamore, Claire Yballa, David N Soleimani-Meigooni, Ganna Blazhenets, Adam L Boxer, Julio C Rojas, Argentina Lario Lago, William J Jagust, Bruce L Miller, Howard J Rosen, William W Seeley, Lea T Grinberg, Gil Dan Rabinovici, Lawren Vandevrede, Renaud La Joie","doi":"10.1212/WNL.0000000000214576","DOIUrl":"10.1212/WNL.0000000000214576","url":null,"abstract":"<p><strong>Background and objectives: </strong>Evaluating tau biomarkers in patients with autopsy data is critical for validating their sensitivity and specificity to Alzheimer disease (AD) neuropathologic changes (ADNCs). We examined associations between [<sup>18</sup>F]flortaucipir tau PET, plasma phosphorylated-tau 217 (p-tau217), and AD neuropathology in a cohort of clinically impaired participants from a tertiary dementia center.</p><p><strong>Methods: </strong>This was a retrospective study conducted at the University of California San Francisco Neurodegenerative Disease Brain Bank that included all participants with a clinical diagnosis of neurodegenerative disease who underwent antemortem flortaucipir-PET and autopsy from 2013 to 2024. Flortaucipir-PET was acquired 80-100 minutes after injection and normalized to the inferior cerebellar cortex; standardized uptake value ratios (SUVRs) were extracted from the entorhinal cortex (early tau region) and the temporal meta-regions of interest (ROIs) (AD-signature region). Plasma p-tau217 was quantified using Simoa (Janssen) in 56 participants (median [interquartile range, IQR] PET-to-plasma duration: 1.6 months [0.24-3.7]). Semiquantitative rating of AD neurofibrillary tangle (NFT) burden in cortical areas was available for 56 participants. The diagnostic performance of tau PET and plasma p-tau217 was assessed using receiver operating characteristic analysis with cross-validation.</p><p><strong>Results: </strong>We analyzed 73 participants (median [IQR] age: 67 [59-73] years, 60% male, median [IQR] PET-to-autopsy duration: 3.9 [2.1-5.1] years) with primary neuropathologic diagnosis of AD (n = 39), frontotemporal lobar degeneration (tauopathies, n = 26; nontauopathies, n = 4), chronic traumatic encephalopathy (n = 2), and Lewy body disease (n = 2). Flortaucipir SUVRs were elevated in participants with a neuropathologic diagnosis of AD compared with non-AD participants. Consistently elevated PET signal was detected in both the entorhinal cortex and temporal meta-ROIs at NFT Braak stage VI and high ADNC levels. No PET signal elevation was observed at intermediate ADNC levels. AD NFT burden correlated with local flortaucipir SUVRs and plasma p-tau217 concentrations across cortical brain regions. Plasma p-tau217 concentrations increased at Braak stages V and VI and correlated with flortaucipir SUVRs (<i>r</i>'s ≥ 0.75). Both markers identified Braak stage V-VI levels with similarly high performance (entorhinal SUVR, area under the curve [AUC] = 0.92 [95% CI 0.91-0.93]; temporal meta-ROI SUVR, AUC = 0.91 [95% CI 0.90-0.92]; plasma p-tau217, AUC = 0.90 [95% CI 0.89-0.91]), but PET outperformed plasma p-tau217 in identifying high/intermediate ADNCs (entorhinal ROI, AUC = 0.94 [95% CI 0.94-0.95]; temporal meta-ROI AUC = 0.94 [95% CI 0.94-0.95]; plasma p-tau217, AUC = 0.89 [95% CI 0.88-0.90]).</p><p><strong>Discussion: </strong>Flortaucipir-PET and plasma p-tau217 both displayed strong specificity for pri","PeriodicalId":19256,"journal":{"name":"Neurology","volume":"106 5","pages":"e214576"},"PeriodicalIF":8.5,"publicationDate":"2026-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146106555","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Expert Consensus Approach to Developing Inpatient Common Data Elements for Neonatal Encephalopathy Research.","authors":"Eric S Peeples, Ulrike Mietzsch, Eleanor J Molloy, Betsy Pilon, Danielle Guez-Barber, Janet Soul, Khorshid Mohammad, Gabrielle deVeber, Vann Chau, Sonia Lomeli Bonifacio, Alexa Kanwit Craig, Jehier Afifi, Hemmen Sabir, Floris Groenendaal, Eilon Shany, Maria L V Dizon, Osuke Iwata, Emel Okulu, Agnes Jermendy, Nem Yun Boo, Mohamed El-Dib, Pia Wintermark","doi":"10.1212/WNL.0000000000214658","DOIUrl":"10.1212/WNL.0000000000214658","url":null,"abstract":"<p><strong>Background and objectives: </strong>Neonatal encephalopathy (NE)-including hypoxic-ischemic encephalopathy (HIE)-is associated with significant morbidity and mortality worldwide. While data registries provide hypothesis-generating data, aid in quality improvement, and track management/outcomes over time, we recently demonstrated that only 4 of 1,281 (0.3%) variables were collected by all 22 international NE/HIE registries: birth weight, gestational age, and 1- and 5-minute Apgar scores. In response, our team set out to develop a set of common inpatient data elements to enable future harmonization of NE/HIE registry data.</p><p><strong>Methods: </strong>Using a modified Delphi method, a panel of 14 international NE experts voted to separate the 1,281 variables from our previous study into \"core elements,\" \"supplemental elements,\" or those that \"do not need to be collected.\" Based on the anonymous survey results, we created draft lists of core and supplemental common data elements (CDEs). These lists were further revised through group consensus meetings and external feedback from global registry leaders and attendants at 2 international conferences.</p><p><strong>Results: </strong>The final data forms include 164 core elements and 225 supplemental elements stratified into 11 domains: demographics; pregnancy, labor, and delivery; delivery room; transport; acid-base; therapeutic hypothermia; neuromonitoring and seizures; neuroimaging; laboratory values (other than acid-base); hospital course; and discharge.</p><p><strong>Discussion: </strong>The CDEs are the first of several important steps to further standardize research and reporting of NE/HIE investigations to perform more efficient and powerful clinical research in the field moving forward. Future studies need to establish a clinical and research definition of HIE and develop CDEs for collecting long-term, family-centered follow-up data postdischarge.</p>","PeriodicalId":19256,"journal":{"name":"Neurology","volume":"106 5","pages":"e214658"},"PeriodicalIF":8.5,"publicationDate":"2026-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12893424/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146150353","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}