Sleep problems and headache are amongst the most common symptoms we experience. It is no surprise that some co-associations between the two exist, although quite how the interactions occur are complex, and quite elusive. There are many layers of considerable overlap in terms of the anatomy, physiology and pharmacology of the brain systems involved in headache and sleep-wake. This chapter describes what is known about the bidirectional relationship between sleep and various headache syndromes, including migraine, cluster headache, and hypnic headache, as well as related conditions such as exploding head syndrome.

Postpartum Psychosis (PP) is a severe and understudied perinatal mental illness which disproportionately affects women with bipolar disorder (BD). A relationship between sleep disturbance and PP is often assumed, but is poorly understood. From a cohort of 2099 individuals with BD, 343 parous women were identified and screened for perinatal psychiatric complications. We compared 117 women who developed PP with 226 who did not. Polygenic Risk Scores (PRS) for BD, schizophrenia, insomnia, short sleep, long sleep, sleep efficiency and sleep duration were computed using PRS-CS. Logistic regression was used to model the effect of each PRS on PP. Higher PRS for insomnia and short sleep were associated with reduced risk of PP. Individuals in the lowest decile for insomnia PRS (RR 1.96, 95% CI 1.25-3.07, p = 3.50 × 10⁻³) and short sleep PRS (RR 2.23, 95% CI 1.40-3.54, p = 7.94 × 10⁻⁴) had approximately double the risk of PP than individuals in the highest decile. The other PRS were not associated with PP. Mendelian Randomisation analyses did not support a causal relationship between sleep traits and PP. However, we demonstrate that the integration of PRS with bipolar subtype can improve prediction accuracy. Individuals with genetic vulnerability to insomnia or short sleep may develop a heightened tolerance to sleep disruption earlier in life, mitigating the impact of childbirth on mood. These findings suggest that genetic susceptibility to sleep disturbance may be important in the aetiology of PP, offering a new potential avenue for risk stratification and targeted prevention.

People with narcolepsy experience delays in diagnosis and inconsistent post-diagnosis care, but the pattern and scale of their healthcare use is poorly described. In this population-based cohort study, we used primary care and linked hospital activity data to compare healthcare use in people with narcolepsy (n=2,772) and a matched comparison group in England (n=13,860). Narcolepsy was defined by a first coded record in primary care or admitted care data between 02 January 1998 and 31 December 2019; this date was the index date for both groups. People with narcolepsy had approximately double the rate of healthcare use in the period from five years before to five years after the index date. Annually, this corresponded on average to an additional 1.9 (95% confidence interval (CI) 1.8-2.0) outpatient events, 0.36 (95% CI 0.30-0.42) admitted patient care events, 0.25 (95% CI 0.22-0.29) Accident & Emergency events and 4.3 (95% CI 3.9-4.7) primary care events per person. Service use in all settings peaked at index and remained elevated for at least 15 years either side. The elevated rates of possible-sleep related outpatient events (respiratory, neurology paediatric, and ear nose & throat) peaked in the year including and after the index date, at 1.50 (95% CI 1.41-1.59); before declining to <0.5 visits per person-year after five years. Our findings of sustained elevated use of healthcare by people with narcolepsy across NHS settings may reflect diagnostic delay, comorbidities, and ongoing narcolepsy-related healthcare needs being met largely outside specialist sleep care, highlighting opportunities to improve healthcare services. ### Competing Interest Statement HS volunteers as a Director & Trustee of Narcolepsy UK, a patient-lead support charity. MAM is a voluntary elected member of the British Sleep Society Executive Committee, has received royalties from Oxford University Press and has received honoraria for an educational activity from BioProjet. SHE is President elect for the Association of British Neurologists (ABN). CWG reports consultancy for GSK with fees paid to LSHTM. AB, HM, EN, KB, IES, and KB have no conflicts of interest to declare. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The protocol for this research was approved via the Clinical Practice Research Datalink (CPRD) Research Data Governance (RDG) process (protocol 22_001887). CPRD has ethics approval from the Health Research Authority to support research using anonymised patient data. Research Ethics Committee (East Midlands Derby, REC reference number 21/EM/0265). The study has additionally been approved by the London School of Hygiene & Tropical Medicine Ethics Committee (Ref 101296). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes This study is based in part on data from the Clinical Practice Research Datalink obtained under licence from the UK Medicines and Healthcare products Regulatory Agency. The terms of our licence to access the data prevent us from sharing individual patient data with third parties. The raw data may be requested directly from CPRD following their usual procedures. National Institute for Health and Care Research, NIHR301730 Wellcome Trust, https://ror.org/029chgv08, 225868/Z/22/Z, 220283/Z/20/Z

INTRODUCTION:Sleep disturbance is common in dementia, impacting daytime function and care. Compared with Alzheimer's disease (AD), sleep in frontotemporal dementia (FTD) is poorly characterized. METHODS:We assessed sleep using the Epworth Sleepiness Scale and Pittsburgh Sleep Quality Index in 58 people with primary progressive aphasia (PPA) and right temporal variant FTD, 32 with AD, and 36 cognitively healthy older volunteers. All participants had cognitive and behavioral assessments. Groups were compared using non-parametric statistics and correlations assessed sleep versus other indices. RESULTS:Subjective sleep duration was increased in all syndromic groups. AD and semantic PPA were associated with increased daytime somnolence. Reported sleep quality varied between syndromes. Across the disease cohort, somnolence correlated with behavioral and empathy deficits; in AD, poorer sleep quality correlated additionally with self-monitoring deficits. DISCUSSION:FTD and AD syndromes have distinct sleep phenotypes, and sleep alterations are associated with behavior. Standard sleep scales require careful interpretation in dementia.

Purpose To assist sleep epidemiology research, we created and tested the accuracy of five algorithms identifying diagnosed Obstructive Sleep Apnoea (OSA) and narcolepsy in routinely collected data from England (01/01/1998–29/03/2021). Methods The primary algorithm identified the first coded record in Clinical Practice Research Datalink (CPRD) primary care or linked hospital admissions data as an incident diagnosis of OSA (n = 92,222) or narcolepsy (n = 1072). Alternative algorithms required codes in CPRD, both datasets, or an additional proximate possible-sleep-related outpatient visit or excessive daytime sleepiness drug prescription (narcolepsy only). Staff in 73/1574 CPRD practices completed online questionnaires for a convenience sample of 144 OSA and 101 narcolepsy cases. We estimated Positive Predictive Values (PPVs) describing the proportion of cases confirmed by a gold standard hospital specialist diagnosis, the percentage of gold standard cases from the primary algorithm retained with alternative algorithms, and time between specialist and recorded diagnosis dates. Results Using the primary algorithm, the PPV (95 % CI) was 75.3 % (69.2–81.3) and 65.2 % (57.0–73.4) for OSA and narcolepsy, respectively: 80.6 % and 62.7 % of confirmed cases were recorded within 6 months of the specialist diagnosis. The CPRD-only algorithm increased the PPV to 85.3 (77.3–91.4, OSA) and 71.0 (58.8–81.3, narcolepsy) and retained high proportions of gold standard cases. Requiring additional outpatient or prescribing data increased PPVs, and for OSA improved diagnostic date accuracy, but omitted a high proportion of gold standard cases. Conclusion Highly accurate OSA diagnoses can be identified in routinely collected data. Recorded cases of narcolepsy are moderately accurate, but diagnosis dates are not.

Postpartum Psychosis (PP) is a severe perinatal psychiatric disorder affecting 1–2 in 1000 individuals following childbirth. Most episodes emerge within the first two weeks postpartum and commonly present with mania and decreased need for sleep. The postnatal period is a time of profound sleep disruption and sleep deprivation is a known trigger for mania and psychosis. Despite growing recognition of the role of sleep in the onset and progression of PP, this relationship remains poorly understood. Existing research is largely retrospective, relies on self-reported data and primarily focuses on women with pre-existing bipolar disorder. This prospective study will integrate subjective and objective sleep measures to investigate the relationship between sleep disturbance and postnatal mania. We aim to establish whether sleep patterns in late pregnancy or the early postpartum period can predict mania as a marker of PP. This prospective observational cohort study is recruiting pregnant women and will follow participants from the late third trimester until two weeks postpartum. We aim to recruit 100 participants, including individuals with and without psychiatric illness, to ensure broader applicability of the findings and capture the full spectrum of postnatal mania risk. Participants will wear a wrist accelerometer continuously during this period to monitor rest-activity patterns and infer objective sleep parameters including sleep duration, efficiency and fragmentation. Self-reported sleep quality and mood symptoms will be measured using the Pittsburgh Sleep Quality Index (PSQI), Altman Self-Rating Mania Scale (ASRM) and Edinburgh Postnatal Depression Scale (PSQI) at baseline and at days 3–5 and 12–14 postpartum. Actigraphy data will be analysed using the GGIR package in R. Associations between sleep measures and ASRM scores will be assessed using Pearson and Spearman correlation coefficients. This study is the first to prospectively investigate sleep and postnatal mania risk in a cohort including both high- and low-risk individuals. By integrating actigraphy with validated self-report measures, it aims to identify rest-activity patterns that may serve as early indicators of PP. Early recognition of sleep disturbances associated with postnatal mania could inform targeted interventions, improving clinical outcomes for women and families affected by PP.

Title Factors influencing English general practitioners referrals to specialist sleep services: a qualitative study using the COM-B model Objectives This study explored the factors influencing access to sleep services for individuals with symptoms of OSA and narcolepsy, from the perspective of general practitioners (GP). Methods A qualitative interview study was conducted with GPs within three areas of England: South London, East Midlands or South West England to explore their views on factors influencing referrals to specialist sleep services. The semi-structured interviews were conducted between November 2024 and April 2025 using an interview guide informed by published research and the COM-B model of behaviour change; this model proposed that Capability (C), Opportunity (O), and Motivation (M) are needed for behaviour (B) change to occur. Data were analysed using exploratory thematic analysis informed by the COM-B model using an iterative approach. Results We conducted 31 interviews, mostly online, with one conducted face-to-face. Our data suggest that the most important factors shaping referral to sleep services are limited capacity of NHS sleep services, limited referral pathways for narcolepsy, inflexible referral pathways for OSA, and limited knowledge of narcolepsy. Conclusions This qualitative study with GPs in England highlights that, although sleep disorders are a common concern, the current healthcare system provides limited support for GPs in managing these conditions. Fundamental sleep medicine service reforms are needed to improve referral pathways. These reforms should be guided by data-driven research that assesses current services in relation to population health needs and evaluates the potential health and economic benefits of expanding service capacity. ### Competing Interest Statement MS, FvS, EN, CWG and IES have no conflicts of interest to declare. KV has received honoraria for educational activities from BI, AZ and Novo Nordisk. MAM is a voluntary executive member of the British Sleep Society and receives Royalties from two Sleep, Health and Society Textbooks published by Oxford University Press. SHE has received honoraria for educational activities from Eisai, Fidia, Lincoln and UCB Pharma. HS is a voluntary Director and Trustee of Narcolepsy UK, a patient-led charity. All authors have read and agreed to the published version of the manuscript. ### Funding Statement Helen Strongman, NIHR Advanced Fellowship NIHR301730, is funded by the National Institute for Health and Care Research (NIHR) for this research project. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR, NHS or the UK Department of Health and Social Care. Charlotte Warren-Gash is supported by a Wellcome Career Development Award (225868/Z/22/Z) Sofia H. Eriksson is partly supported by the National Institute for Health and Care Research University College London Hospitals Biomedical Research Centre funding scheme. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Health Research Authority and the London School of Hygiene and Tropical Medicine gave ethical approval for this work. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors

Sleep is a highly organised and regular process which is divided into stages defined by changes in electroencephalogram (EEG), electro-oculogram and muscle tone electromyography. Rapid eye movement (REM) sleep is characterised by desynchronisation of the EEG with the appearances of faster frequency rhythms. The regulation of wakefulness and sleep depends on complex neuronal and biochemical interactions involving the cortex, diencephalon and brain stem. Central sleep apnoea is caused by a lack of drive to breathe during sleep, resulting in insufficient or absent respiratory effort and compromised gas exchange. Intrinsic circadian rhythms are fundamental processes that control the sleep-wake cycle. Circadian rhythm disorders have been associated with neurological and psychiatric diseases, such as schizophrenia. REM-related parasomnias include REM sleep behaviour disorder, recurrent isolated sleep paralysis and nightmare disorder. Rhythmic movement disorders are a group of behaviours characterised by rhythmic movements which typically occur just at sleep onset and may persist into light sleep.

Clinicians and people with narcolepsy report varied access to higher-cost narcolepsy treatments in England associated with variations in national and local commissioning. There are no publicly available data quantifying use of these drugs to support policy decisions. We therefore aimed to describe national, regional and local prescribing trends for higher-cost narcolepsy drugs using new national databases. We used the English prescribing dataset and secondary care medicines data to quantify volumes of high-cost narcolepsy drugs issued between 01 January 2019 and 31 December 2022. Volumes were converted to World Health Organisation defined daily doses, to estimate the monthly number of defined daily doses of sodium oxybate, pitolisant and solriamfetol issued by each integrated care board and region. We compared national, integrated care board, and regional level issuance of each drug over time. Analysis of almost 6000 primary care prescriptions and 2000 cumulative months of secondary care pharmacy stock data, issued across 41/42 integrated care boards in England, revealed a 49.1% increase in issuance of high-cost narcolepsy drugs between 2019 and 2022. In 2022, sodium oxybate accounted for 52.66% of issuance, pitolisant 43.09% and solriamfetol 4.25%, with 22.31% of defined daily doses issued in primary care. Three integrated care boards (NHS Southeast London, NHS Cumbria and North-East, NHS Cheshire and Merseyside) predominate, issuing 56.33% of all defined daily doses. Variations between integrated care boards and regions differ substantially by drug and route of issuance. Our findings describe substantial variation in the use of specialist narcolepsy drugs in England, and highlight the untapped potential of using large, public domain datasets to publicly review higher-cost drug prescribing.

Prior to the COVID-19 pandemic, we demonstrated the efficacy of a novel Cognitive Behavioural Therapy programme for the treatment of Non-Rapid Eye Movement Parasomnias (CBT-NREMP) in reducing NREM parasomnia events, insomnia and associated mood severities. Given the increased prevalence and worsening of sleep and affective disorders during the pandemic, we examined the sustainability of CBT-NREMP following the U.K.'s longest COVID-19 lockdown (6 January 2021-19 July 2021) by repeating the investigations via a mail survey in the same 46 patient cohort, of which 12 responded. The survey included validated clinical questionnaires relating to NREM parasomnia (Paris Arousal Disorder Severity Scale), insomnia (Insomnia Severity Index) and anxiety and depression (Hospital Anxiety and Depression Scale). Patients also completed a targeted questionnaire (i.e., Impact of COVID-19 Lockdown Questionnaire, ICLQ) to assess the impact of COVID-19 lockdown on NREM parasomnia severity, mental health, general well-being and lifestyle. Clinical measures of NREM parasomnia, insomnia, anxiety and depression remained stable, with no significant changes demonstrated in questionnaire scores by comparison to the previous investigatory period prior to the COVID-19 pandemic: p (ISI) = 1.0; p (HADS) = 0.816; p (PADSS) = 0.194. These findings support the longitudinal effectiveness of CBT-NREMP for up to three years following the clinical intervention, and despite of the COVID-19 pandemic.

Background Solriamfetol, Pitolisant, and Sodium Oxybate are relatively new, high-cost, treatments for Narcolepsy, prescribed initially in secondary care. There is significant variation in the pathways for funding these treatments, from NICE approval for Solriamfetol, to shared care protocols (SCPs) and individual funding requests for some or all medications in certain trusts. Secondary care medicines data (SCMD) is open source data providing information on the quantities and types of medicines prescribed in secondary care. Through analysing SCMD, we review and describe the current regional prescribing trends for narcolepsy management. Methods SCMD for high-cost drugs prescribed for Narcolepsy (January 2019- December 2021) was retrieved from the NHS Service Business Authority website, from 219 different hospital trusts. Results Analysis of >30,000 prescribing months, revealed significant variation in prescribing of high cost drugs to treat narcolepsy. The volume of high-cost drugs prescribed in SE London & Cheshire/Merseyside exceeded the combined total of all other trusts, comparatively there was minimal prescribing in the East and South-west regions. Conclusion The significant regional variation in the prescribing of narcolepsy treatments may represent inequalities in access to Narcolepsy care. Furthermore, this study highlights the potential benefits of SCMD in reviewing specialist services and the prescribing of high-cost drugs.

INTRODUCTION: It is thought that CSF pulsatility has an important role in brain physiology during sleep. Yet few studies have looked into changes of ICP and pulsatility during sleep. METHODS: A single centre prospective cohort study. Patients undergoing 24 h ICP monitoring for suspected CSF dynamic disorders underwent concomitant polysomnography. Clinical and radiological presentation were derived from the patient’s records. Aggregate mean ICP and pulse amplitude (mPA) values were recorded for each sleep stage. Sleep staging was performed in conformity with the AASM guidelines. Within subject values were compared using repeated-measures, one-way ANOVA. Post-hoc paired t-tests were used to compare sleep stages between groups corrected for multiple comparisons (Benjamini-Hochberg method). RESULTS: A total of 12 patients (10 females, 2 males; mean age 40.8 years, SD+/- 12.9) with complete data were analysed. There were significant differences in mean ICP between sleep stages (F(3,33) = 10.7, p < 0.00001). Post-hoc paired t-tests revealed significant differences between rapid eye movement (REM; mean ICP 14.4 mmHg) and all other sleep stages (mean ICP/N1 = 12.0 mmHg, t = -3.6, p = 0.004; ICP/N2 = 11.8 mmHg, t = -4.3, p = 0.001; ICP/N3 = 12.3 mmHg, t = -3.5, p = 0.004). Significant differences were also found in mPA between sleep stages (F(3,33) = 5.7, p = 0.003) confirmed on post-hoc paired t-tests: REM (mean mPA 5.5 mmHg and all other sleep stages: mPA/N1 = 4.7 mmHg, t = -2.3, p = 0.04; mPA/N2 = 4.3 mmHg, t = -2.7, p = 0.02; mPA/N3 = 4.5 mmHg, t = -2.3, p = 0.04). CONCLUSIONS: REM is characterized by higher ICP and mPA values, result confirmed in near-normal patients included in this cohort.

Background: Mild cognitive impairment (MCI) is commonly present at the time of Parkinson's Disease (PD) diagnosis, but its prevalence amongst individuals at increased risk of PD is unclear.Methods: Cognition was assessed using the Montreal Cognitive Assessment (MoCA) in 208 participants in the PREDICT-PD study, and 25 participants with REM-sleep behaviour disorder (RBD). Prevalence of MCI level I was determined in all participants, and level II MCI in the RBD sub-group.Results: Total MoCA scores were worse in the higher risk than the lower risk group defined as those below the 15th percentile of risk (p = 0.009), and in the RBD group compared to all healthy participants (p < 0.001). The prevalence of MCI level I was 12.8% in the lower-risk, 21.9% in the higher-risk (within the highest 15th percentile) and 64% in RBD participants; 66% of RBD participants had MCI level II with multi-domain MCI, but particularly attention and memory deficits. Conclusions: Cognitive impairment is increased in different groups at higher risk of PD, particularly in the sub-group formally diagnosed with RBD.

Introduction In the UK, approximately 1.5 million and 30,000 people are estimated to have Obstructive Sleep Apnoea (OSA) or narcolepsy, respectively, with far fewer diagnosed. We used routinely collected National Health Service data to describe diagnosed prevalence, stratified by demographic characteristics in England. Methods We used primary care data from the Clinical Practice Research Datalink (CPRD) to construct a study population comprising people registered in contributing practices between 02/01/1998 and 29/03/2021, and eligible for linkage to Hospital Episode Statistics (HES) and area-based data. OSA and narcolepsy cases were determined from the first coded primary care or HES record. We estimated prevalence rates directly standardised to calendar year-specific populations, and the number of diagnosed people in 2019. Using prevalence data from 2019, we then used log binomial regression models to estimate prevalence ratios for demographic covariates. Results Our study population of 37,861,596 people included 272,293 and 6,985 prevalent cases of OSA and narcolepsy, respectively. Estimated age and sex standardised 2019 prevalence rates in England were 1.4% and 0.020% for OSA and narcolepsy, respectively, scaling up to 621,832 (618,652–625,012) and 11,324 (10,894–11,753) people nationwide. Prevalence rates increased over time. In 2019, OSA prevalence rates were highest in men aged 55 to <75. Following adjustment for age and sex, OSA prevalence rates were highest in the North-East, urban communities, areas of higher deprivation and among White and Black people (figure 1). Narcolepsy prevalence steadily increased from childhood to middle age; it was most common among females, black people and in rural areas and lowest in South-Asians/Other ethnic groups and in the least and conversely most deprived areas (figure 2). Discussion Prevalent diagnosed cases of OSA and narcolepsy are lower than expected, with differences between demographic groups potentially reflecting variation in risk factors, access to specialist sleep centres, and socio-economic consequences of sleep disorders.

Fluids and Barriers of the CNS 2022, 19(1)Introduction: Non-invasive devices that reliably monitor brain compliance can reduce patients' exposure to potentially harmful or costly imaging modalities.The aim of this study is to assess this situation with a new non-invasive headband device developed by brain4care ® .Methods: Patients were submitted to either surgical or valve adjustment procedures and monitored before and after the procedure by the brain4care ® headband device.Sixteen symptomatic patients with a previous radiological diagnosis of hydrocephalus, in need of intervention, between the ages of 26 and 73 were analyzed.Results: Out of these patients, 5 were submitted to external ventricular drainages (EVD), 9 to ventriculoperitoneal shunting (VPS), and 2 to valve adjustment.All patients had an abnormal cerebral complacency wave, with P2 > P1 before the procedure, and after, 75% of the patients changed to a normal pattern with P1 > P2.All patients self-reported feeling comfortable with the device.Conclusions: By providing practitioners the Intracranial Pressure (ICP) waveform and values of the P2 / P1 ratio, without quantification of ICP values, this non-invasive device can decrease costs, the time needed to diagnose whether changes or revision of the shunt, and complications of invasive methods for ICP monitoring.Moreover, it can be used in scenarios where invasive ICP monitoring is not indicated, yet would still be insightful.

Objective: Patients with Sturge-Weber Syndrome (SWS) experience varying degrees of neurological problems - including epilepsy, hemiparesis, learning disability (LD), and stroke-like episodes. While the range of clinical problems experienced by children with SWS is well recognized, the spectrum of clinical presentation and its treatment during adulthood has been relatively neglected in the literature to date. This study explored the natural history of epileptic and nonepileptic seizures into adulthood in patients with SWS, and their treatment, and investigated whether any clinical factors predict which symptoms a patient will experience during adulthood.Methods: A retrospective case-note review of a cohort of 26 adults with SWS at the National Hospital for Neurology and Neurosurgery (NHNN). Childhood data were also recorded, where available, to enable review of change/development of symptoms over time.Results: The course of epilepsy showed some improvement in adulthood - seventeen adults continued to have seizures, while six patients gained seizure freedom, and no one had adult-onset seizures. However, seizures did worsen for some patients. Although no factors reached statistical significance regarding predicting continued epilepsy in adulthood, being male, more severe LD, having required epilepsy surgery, and bilateral cortical involvement may be important. Nonepileptic seizures (NES) also began during adulthood for four patients.Significance: By adulthood, there is some degree of improvement in epilepsy overall; while NES may occur for the first time. While the majority of the results did not survive adjustments for multiple comparisons, some interesting trends appeared, which require further investigation in a multicenter national audit. Patients with more neurologically severe presentations during childhood may continue to experience seizures. Careful monitoring and screening are needed during adulthood, to detect changes and newly developing symptoms such as NES, and target treatment promptly.& COPY; 2023 The Author(s). Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).