{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T05:58:19Z","timestamp":1791352699069,"version":"4.3.1"},"reference-count":49,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T00:00:00Z","timestamp":1756684800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T00:00:00Z","timestamp":1756684800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2026,6,4]],"date-time":"2026-06-04T00:00:00Z","timestamp":1780531200000},"content-version":"am","delay-in-days":276,"URL":"http:\/\/www.elsevier.com\/open-access\/userlicense\/1.0\/"},{"start":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T00:00:00Z","timestamp":1756684800000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-017"},{"start":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T00:00:00Z","timestamp":1756684800000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-037"},{"start":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T00:00:00Z","timestamp":1756684800000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-012"},{"start":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T00:00:00Z","timestamp":1756684800000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-029"},{"start":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T00:00:00Z","timestamp":1756684800000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-004"}],"funder":[{"DOI":"10.13039\/100009886","name":"American Academy of Sleep Medicine","doi-asserted-by":"publisher","award":["R01 NS111280"],"award-info":[{"award-number":["R01 NS111280"]}],"id":[{"id":"10.13039\/100009886","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100013981","name":"American Academy of Sleep Medicine Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100013981","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000065","name":"National Institute of Neurological Disorders and Stroke","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000065","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Sleep Medicine"],"published-print":{"date-parts":[[2025,9]]},"DOI":"10.1016\/j.sleep.2025.106627","type":"journal-article","created":{"date-parts":[[2025,6,1]],"date-time":"2025-06-01T10:49:29Z","timestamp":1748774969000},"page":"106627","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":5,"special_numbering":"C","title":["Idiopathic hypersomnia symptoms over Time: Longitudinal follow up from the Hypersomnia Foundation registry"],"prefix":"10.1016","volume":"133","author":[{"given":"Audrika","family":"Chattaraj","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amanda A.","family":"Freeman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kendall J.","family":"Nichols","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jason C.","family":"Ong","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David T.","family":"Plante","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Prabhjyot","family":"Saini","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine Friederich","family":"Murray","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca","family":"King","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Donald L.","family":"Bliwise","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2329-6847","authenticated-orcid":false,"given":"Lynn Marie","family":"Trotti","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.sleep.2025.106627_bib1","series-title":"Text revision (ICSD-3-TR)","article-title":"International classification of sleep disorders","year":"2023"},{"key":"10.1016\/j.sleep.2025.106627_bib2","doi-asserted-by":"crossref","first-page":"311","DOI":"10.2147\/NSS.S266090","article-title":"Idiopathic hypersomnia: historical account, critical review of current tests and criteria, diagnostic evaluation in the absence of biological markers and robust electrophysiological diagnostic criteria","volume":"14","author":"Billiard","year":"2022","journal-title":"Nat Sci Sleep"},{"issue":"161","key":"10.1016\/j.sleep.2025.106627_bib3","doi-asserted-by":"crossref","DOI":"10.1126\/scitranslmed.3004685","article-title":"Modulation of vigilance in the primary hypersomnias by endogenous enhancement of GABAA receptors","volume":"4","author":"Rye","year":"2012","journal-title":"Sci Transl Med"},{"key":"10.1016\/j.sleep.2025.106627_bib4","doi-asserted-by":"crossref","first-page":"424","DOI":"10.3389\/fneur.2018.00424","article-title":"Idiopathic hypersomnia patients revealed longer circadian period length in peripheral skin fibroblasts","volume":"9","author":"Materna","year":"2018","journal-title":"Front Neurol"},{"issue":"1","key":"10.1016\/j.sleep.2025.106627_bib5","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0085255","article-title":"Altered dynamics in the circadian oscillation of clock genes in dermal fibroblasts of patients suffering from idiopathic hypersomnia","volume":"9","author":"Lippert","year":"2014","journal-title":"PLoS One"},{"key":"10.1016\/j.sleep.2025.106627_bib6","doi-asserted-by":"crossref","first-page":"366","DOI":"10.1016\/S1567-424X(09)70183-7","article-title":"A contribution to pathophysiology of idiopathic hypersomnia","volume":"53","author":"Nevsimalova","year":"2000","journal-title":"Suppl Clin neurophysiol"},{"key":"10.1016\/j.sleep.2025.106627_bib7","doi-asserted-by":"crossref","first-page":"131","DOI":"10.1016\/j.sleep.2016.07.012","article-title":"Diurnal and nocturnal cardiovascular variability and heart rate arousal response in idiopathic hypersomnia","volume":"24","author":"Sforza","year":"2016","journal-title":"Sleep Med"},{"issue":"5","key":"10.1016\/j.sleep.2025.106627_bib8","doi-asserted-by":"crossref","first-page":"749","DOI":"10.5664\/jcsm.8344","article-title":"Frequency and severity of autonomic symptoms in idiopathic hypersomnia","volume":"16","author":"Miglis","year":"2020","journal-title":"J Clin Sleep Med"},{"issue":"11","key":"10.1016\/j.sleep.2025.106627_bib9","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsz156","article-title":"Beyond sleepy: structural and functional changes of the default-mode network in idiopathic hypersomnia","volume":"42","author":"Pomares","year":"2019","journal-title":"Sleep"},{"issue":"10","key":"10.1016\/j.sleep.2025.106627_bib10","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsx140","article-title":"Altered regional cerebral blood flow in idiopathic hypersomnia","volume":"40","author":"Boucetta","year":"2017","journal-title":"Sleep"},{"key":"10.1016\/j.sleep.2025.106627_bib11","doi-asserted-by":"crossref","first-page":"350","DOI":"10.3389\/fneur.2017.00350","article-title":"[18F]Fludeoxyglucose-Positron emission tomography evidence for cerebral hypermetabolism in the awake state in narcolepsy and idiopathic hypersomnia","volume":"8","author":"Dauvilliers","year":"2017","journal-title":"Front Neurol"},{"issue":"8","key":"10.1016\/j.sleep.2025.106627_bib12","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsab050","article-title":"Regional brain metabolism differs between narcolepsy type 1 and idiopathic hypersomnia","volume":"44","author":"Trotti","year":"2021","journal-title":"Sleep"},{"issue":"3","key":"10.1016\/j.sleep.2025.106627_bib13","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsae246","article-title":"Absence of dysregulation in amplitude and phase of circadian rhythm of core body temperature in idiopathic hypersomnia: a case-control study","volume":"48","author":"Adam","year":"2024","journal-title":"Sleep"},{"issue":"2","key":"10.1016\/j.sleep.2025.106627_bib14","doi-asserted-by":"crossref","first-page":"259","DOI":"10.1002\/ana.24710","article-title":"Absence of gamma-aminobutyric acid-a receptor potentiation in central hypersomnolence disorders","volume":"80","author":"Dauvilliers","year":"2016","journal-title":"Ann Neurol"},{"issue":"6","key":"10.1016\/j.sleep.2025.106627_bib15","doi-asserted-by":"crossref","first-page":"904","DOI":"10.1002\/ana.24940","article-title":"Rigor, reproducibility, and in vitro cerebrospinal fluid assays: the devil in the details","volume":"81","author":"Moody","year":"2017","journal-title":"Ann Neurol"},{"issue":"1","key":"10.1016\/j.sleep.2025.106627_bib16","doi-asserted-by":"crossref","first-page":"47","DOI":"10.1016\/j.jsmc.2016.10.013","article-title":"Hypersomnia: evaluation, treatment, and social and economic aspects","volume":"12","author":"Saini","year":"2017","journal-title":"Sleep Med Clin"},{"issue":"1","key":"10.1016\/j.sleep.2025.106627_bib17","doi-asserted-by":"crossref","first-page":"53","DOI":"10.1016\/S1474-4422(21)00368-9","article-title":"Efficacy and safety of lower-sodium oxybate in adults with idiopathic hypersomnia: a phase 3, placebo-controlled, double-blind, randomized withdrawal study","volume":"21","author":"Dauvilliers","year":"2022","journal-title":"Lancet Neurol"},{"issue":"1","key":"10.1016\/j.sleep.2025.106627_bib18","doi-asserted-by":"crossref","first-page":"74","DOI":"10.1111\/jsr.12201","article-title":"Modafinil in the treatment of idiopathic hypersomnia without long sleep time-a randomized, double-blind, placebo-controlled study","volume":"24","author":"Mayer","year":"2015","journal-title":"J Sleep Res"},{"key":"10.1016\/j.sleep.2025.106627_bib19","doi-asserted-by":"crossref","first-page":"A250","DOI":"10.1093\/sleepj\/zsx050.676","article-title":"The effectiveness of modafinil for the treatment of idiopathic hypersomnia","volume":"40","author":"Inoue","year":"2017","journal-title":"Sleep"},{"key":"10.1016\/j.sleep.2025.106627_bib20","doi-asserted-by":"crossref","DOI":"10.1016\/j.smrv.2023.101766","article-title":"Update on the treatment of idiopathic hypersomnia: progress, challenges, and expert opinion","volume":"69","author":"Arnulf","year":"2023","journal-title":"Sleep Med Rev"},{"issue":"11","key":"10.1016\/j.sleep.2025.106627_bib21","doi-asserted-by":"crossref","first-page":"909","DOI":"10.1007\/s40263-024-01122-y","article-title":"Modafinil versus amphetamine-dextroamphetamine for idiopathic hypersomnia and narcolepsy type 2: a randomized, blinded, non-inferiority trial","volume":"38","author":"Trotti","year":"2024","journal-title":"CNS Drugs"},{"issue":"9","key":"10.1016\/j.sleep.2025.106627_bib22","doi-asserted-by":"crossref","first-page":"1895","DOI":"10.5664\/jcsm.9326","article-title":"Treatment of central disorders of hypersomnolence: an American Academy of Sleep Medicine systematic review, meta-analysis, and GRADE assessment","volume":"17","author":"Maski","year":"2021","journal-title":"J Clin Sleep Med"},{"issue":"3","key":"10.1016\/j.sleep.2025.106627_bib23","doi-asserted-by":"crossref","first-page":"454","DOI":"10.1002\/ana.24459","article-title":"Clarithromycin in gamma-aminobutyric acid-Related hypersomnolence: a randomized, crossover trial","volume":"78","author":"Trotti","year":"2015","journal-title":"Ann Neurol"},{"issue":"1","key":"10.1016\/j.sleep.2025.106627_bib24","doi-asserted-by":"crossref","first-page":"150","DOI":"10.1186\/s13023-016-0528-6","article-title":"The RUDY study platform - a novel approach to patient driven research in rare musculoskeletal diseases","volume":"11","author":"Javaid","year":"2016","journal-title":"Orphanet J Rare Dis"},{"issue":"2","key":"10.1016\/j.sleep.2025.106627_bib25","doi-asserted-by":"crossref","first-page":"405","DOI":"10.1111\/head.13714","article-title":"Development of a prospective real-world data clinical registry of children and adolescents with migraine","volume":"60","author":"Hornik","year":"2020","journal-title":"Headache"},{"key":"10.1016\/j.sleep.2025.106627_bib26","first-page":"68","article-title":"Design and development of a web-based registry for Coronavirus (COVID-19) disease","volume":"34","author":"Kazemi-Arpanahi","year":"2020","journal-title":"Med J Islam Repub Iran"},{"issue":"1","key":"10.1016\/j.sleep.2025.106627_bib27","first-page":"26","article-title":"A web-based registry for patients with sarcoidosis","volume":"34","author":"Gerke","year":"2017","journal-title":"Sarcoidosis Vasc Diffuse Lung Dis"},{"issue":"6","key":"10.1016\/j.sleep.2025.106627_bib28","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0178639","article-title":"Characterization and utilization of an international neurofibromatosis web-based, patient-entered registry: an observational study","volume":"12","author":"Seidlin","year":"2017","journal-title":"PLoS One"},{"key":"10.1016\/j.sleep.2025.106627_bib29","doi-asserted-by":"crossref","first-page":"369","DOI":"10.2147\/CLEP.S83830","article-title":"SpineData - a Danish clinical registry of people with chronic back pain","volume":"7","author":"Kent","year":"2015","journal-title":"Clin Epidemiol"},{"key":"10.1016\/j.sleep.2025.106627_bib30","article-title":"Data harmonization for collaborative research among MS registries: a case study in employment","author":"Salter","year":"2020","journal-title":"Mult Scler"},{"key":"10.1016\/j.sleep.2025.106627_bib31","doi-asserted-by":"crossref","first-page":"343","DOI":"10.1016\/j.sleep.2020.08.034","article-title":"Disease symptomatology and response to treatment in people with idiopathic hypersomnia: initial data from the Hypersomnia Foundation registry","volume":"75","author":"Trotti","year":"2020","journal-title":"Sleep Med"},{"issue":"1","key":"10.1016\/j.sleep.2025.106627_bib32","doi-asserted-by":"crossref","first-page":"35","DOI":"10.1111\/ane.12504","article-title":"Different fates of excessive daytime sleepiness: survival analysis for remission","volume":"134","author":"Kim","year":"2016","journal-title":"Acta Neurol Scand"},{"issue":"10","key":"10.1016\/j.sleep.2025.106627_bib33","doi-asserted-by":"crossref","first-page":"1274","DOI":"10.1093\/sleep\/30.10.1274","article-title":"Idiopathic hypersomnia: a study of 77 cases","volume":"30","author":"Anderson","year":"2007","journal-title":"Sleep"},{"issue":"8","key":"10.1016\/j.sleep.2025.106627_bib34","doi-asserted-by":"crossref","first-page":"1423","DOI":"10.1093\/brain\/120.8.1423","article-title":"Idiopathic hypersomnia. A series of 42 patients","volume":"120","author":"Bassetti","year":"1997","journal-title":"Brain"},{"issue":"2","key":"10.1016\/j.sleep.2025.106627_bib35","doi-asserted-by":"crossref","DOI":"10.1111\/jsr.14011","article-title":"Idiopathic hypersomnia years after the diagnosis","volume":"33","author":"Sonka","year":"2024","journal-title":"J Sleep Res"},{"issue":"2","key":"10.1016\/j.sleep.2025.106627_bib36","doi-asserted-by":"crossref","DOI":"10.1212\/WNL.0000000000207994","article-title":"Prevalence and course of idiopathic hypersomnia in the Wisconsin sleep cohort study","volume":"102","author":"Plante","year":"2024","journal-title":"Neurology"},{"key":"10.1016\/j.sleep.2025.106627_bib37","doi-asserted-by":"crossref","first-page":"352","DOI":"10.1016\/j.sleep.2024.07.024","article-title":"Validation and performance of the sleep inertia questionnaire in central disorders of hypersomnolence","volume":"121","author":"Sung","year":"2024","journal-title":"Sleep Med"},{"issue":"15","key":"10.1016\/j.sleep.2025.106627_bib38","doi-asserted-by":"crossref","first-page":"e1754","DOI":"10.1212\/WNL.0000000000007264","article-title":"Measurement of symptoms in idiopathic hypersomnia: the idiopathic hypersomnia severity Scale","volume":"92","author":"Dauvilliers","year":"2019","journal-title":"Neurology"},{"issue":"5","key":"10.1016\/j.sleep.2025.106627_bib39","doi-asserted-by":"crossref","first-page":"1395","DOI":"10.5664\/jcsm.9884","article-title":"The Psychomotor Vigilance Test as a measure of alertness and sleep inertia in people with central disorders of hypersomnolence","volume":"18","author":"Trotti","year":"2022","journal-title":"J Clin Sleep Med"},{"issue":"1","key":"10.1016\/j.sleep.2025.106627_bib40","doi-asserted-by":"crossref","DOI":"10.1093\/sleep\/zsab220","article-title":"Sleep inertia measurement with the psychomotor vigilance task in idiopathic hypersomnia","volume":"45","author":"Evangelista","year":"2022","journal-title":"Sleep"},{"issue":"10","key":"10.1016\/j.sleep.2025.106627_bib41","doi-asserted-by":"crossref","first-page":"1811","DOI":"10.5664\/jcsm.10698","article-title":"Long-term efficacy and safety of low-sodium oxybate in an open-label extension period of a placebo-controlled, double-blind, randomized withdrawal study in adults with idiopathic hypersomnia","volume":"19","author":"Morse","year":"2023","journal-title":"J Clin Sleep Med"},{"issue":"1","key":"10.1016\/j.sleep.2025.106627_bib42","doi-asserted-by":"crossref","DOI":"10.1093\/sleepadvances\/zpae073","article-title":"Psychiatric comorbidity in Danish patients with narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia: a case-control study","volume":"5","author":"Haubjerg Osterby","year":"2024","journal-title":"Sleep Adv"},{"issue":"12","key":"10.1016\/j.sleep.2025.106627_bib43","doi-asserted-by":"crossref","first-page":"1955","DOI":"10.5664\/jcsm.11298","article-title":"Insights from a 10-year Australasian idiopathic hypersomnia patient data registry study","volume":"20","author":"Anderson","year":"2024","journal-title":"J Clin Sleep Med"},{"issue":"8","key":"10.1016\/j.sleep.2025.106627_bib44","doi-asserted-by":"crossref","first-page":"1255","DOI":"10.5664\/jcsm.8482","article-title":"Prevalence of narcolepsy and other sleep disorders and frequency of diagnostic tests from 2013-2016 in insured patients actively seeking care","volume":"16","author":"Acquavella","year":"2020","journal-title":"J Clin Sleep Med"},{"key":"10.1016\/j.sleep.2025.106627_bib45","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1053\/smrv.2001.0168","article-title":"Idiopathic hypersomnia","volume":"5","author":"Billiard","year":"2001","journal-title":"Sleep Med Rev"},{"key":"10.1016\/j.sleep.2025.106627_bib46","doi-asserted-by":"crossref","first-page":"488","DOI":"10.1016\/j.sleep.2024.05.013","article-title":"Clinical considerations in the treatment of idiopathic hypersomnia","volume":"119","author":"Thorpy","year":"2024","journal-title":"Sleep Med"},{"key":"10.1016\/j.sleep.2025.106627_bib47","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1016\/j.smrv.2015.08.007","article-title":"Idiopathic hypersomnia","volume":"29","author":"Billiard","year":"2016","journal-title":"Sleep Med Rev"},{"issue":"6","key":"10.1016\/j.sleep.2025.106627_bib48","doi-asserted-by":"crossref","first-page":"636","DOI":"10.1136\/jnnp.2008.161588","article-title":"Psychological health in central hypersomnias: the French Harmony study","volume":"80","author":"Dauvilliers","year":"2009","journal-title":"J Neurol Neurosurg Psychiatry"},{"key":"10.1016\/j.sleep.2025.106627_bib49","first-page":"31","article-title":"Narcolepsy and hypersomnia: review and classification of 642 personally observed cases","volume":"119","author":"Roth","year":"1976","journal-title":"Schweiz Arch Neurol Neurochir Psych"}],"container-title":["Sleep Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1389945725003028?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1389945725003028?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,8,6]],"date-time":"2025-08-06T19:58:59Z","timestamp":1754510339000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1389945725003028"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,9]]},"references-count":49,"alternative-id":["S1389945725003028"],"URL":"https:\/\/doi.org\/10.1016\/j.sleep.2025.106627","relation":{},"ISSN":["1389-9457"],"issn-type":[{"value":"1389-9457","type":"print"}],"subject":[],"published":{"date-parts":[[2025,9]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Idiopathic hypersomnia symptoms over Time: Longitudinal follow up from the Hypersomnia Foundation registry","name":"articletitle","label":"Article Title"},{"value":"Sleep Medicine","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.sleep.2025.106627","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2025 Elsevier B.V. All rights are reserved, including those for text and data mining, AI training, and similar technologies.","name":"copyright","label":"Copyright"}],"article-number":"106627"}}