Evidence map›Paper›PMID 39150700›Full record

ArticleJournal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine2024

Insights from a 10-year Australasian idiopathic hypersomnia patient data registry study.

Jack Anderson, Brendon J Yee, Ronald Grunstein, Elie Matar, Michelle Chadwick, Elizabeth Machan, Julia Chapman, Jian Tai, Bandana Saini, Sheila Sivam

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Article in Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine, 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. Idiopathic hypersomnia is a 24-hour disorder.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2025
    Review
  2. Review
  3. Article
  4. Article
  5. The borderland down under.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2024
    Article
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

10 authors.

Jack AndersonUniversity of Sydney, Sydney, New South Wales, Australia.
Brendon J YeeUniversity of Sydney, Sydney, New South Wales, Australia.
Ronald GrunsteinUniversity of Sydney, Sydney, New South Wales, Australia.
Elie MatarUniversity of Sydney, Sydney, New South Wales, Australia.
Michelle ChadwickHypersomnolence Australia, Algester, Queensland, Australia.
Elizabeth MachanUniversity of Sydney, Sydney, New South Wales, Australia.
Julia ChapmanWoolcock Institute of Medical Research, Sydney, New South Wales, Australia.
Jian TaiWoolcock Institute of Medical Research, Sydney, New South Wales, Australia.
Bandana SainiUniversity of Sydney, Sydney, New South Wales, Australia.
Sheila SivamUniversity of Sydney, Sydney, New South Wales, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

STUDY

objectivesIdiopathic hypersomnia (IH) is a disorder of central hypersomnolence that results in excessive daytime sleepiness in the absence of another identifying cause. Case studies from sleep clinic patients may not be a fair representation of the wider IH population. This study aims to better characterize patients diagnosed with IH in Australia and New Zealand using online patient-driven survey data.

methodsA retrospective analysis of 686 participants from the Hypersomnolence Australia Patient Data Registry diagnosed with either IH (n = 554), narcolepsy type 1 (n = 54), or narcolepsy type 2 (n = 78) between January 2013 and October 2022 was performed.

resultsParticipants with IH reported additional sleep disorders such as obstructive sleep apnea (16.4%) and restless legs syndrome (7.9%), and notable comorbidities included depression (46.2%) and anxiety (50%). There was a mean delay in diagnosis of 10 years in participants with IH, when compared to symptom onset. IH presents with unique but also overlapping symptomatology with narcolepsy type 2, with similar reporting of long daytime naps, unrefreshed sleep, and automatic behavior. Modafinil was the most common medication (45.5%) used by participants with IH, followed by dexamphetamine (44.2%). Most participants with IH reported receiving physicians' advice regarding positive lifestyle changes but recommend that newly diagnosed patients be given more advice about medication use.

conclusionsThis study demonstrates a delay in IH diagnosis when compared to symptom onset and overlapping features of IH and narcolepsy type 2. It also highlights the heterogeneous presentation of IH and the value of large patient registries in future research. CITATION: Anderson J, Yee BJ, Grunstein R, et al. Insights from a 10-year Australasian idiopathic hypersomnia patient data registry study.

Indexed as

Idiopathic HypersomniaRegistriesAdultAustraliaDisorders of Excessive SomnolenceFemaleHumansMaleMiddle AgedModafinilNarcolepsyNew ZealandRetrospective StudiesSurveys and QuestionnairesModafinilidiopathic hypersomnolencenarcolepsypatient registry

Identifiers

PMID39150700
PMCPMC11609833

What OpenQuestion holds

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Read underepoch 390

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.