Evidence map›Paper›PMID 36247899›Full record

ArticleMovement disorders clinical practice2022

Patient-Reported Symptoms in the Global Multiple System Atrophy Registry.

Jose-Alberto Palma, Florian Krismer, Wassilios G Meissner, Mechteld Kuijpers, Patricio Millar-Vernetti, Miguel A Perez, Alessandra Fanciulli, Lucy Norcliffe-Kaufmann, Pam Bower, Gregor K Wenning and 1 more

Abstract read
In one paragraph

Article in Movement disorders clinical practice, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. Review
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

11 authors.

Jose-Alberto PalmaDepartment of Neurology, Dysautonomia Center New York University School of Medicine New York New York USA.ORCID https://orcid.org/0000-0002-1345-6774
Florian KrismerDepartment of Neurology Innsbruck Medical University Innsbruck Austria.ORCID https://orcid.org/0000-0002-4493-5073
Wassilios G MeissnerCentre Hospitalier Universitaire, Bordeaux, Service de Neurologie des Maladies Neurodégénératives Bordeaux France.ORCID https://orcid.org/0000-0003-2172-7527
Mechteld KuijpersDepartment of Neurology, Dysautonomia Center New York University School of Medicine New York New York USA.
Patricio Millar-VernettiDepartment of Neurology, Dysautonomia Center New York University School of Medicine New York New York USA.
Miguel A PerezDepartment of Neurology, Dysautonomia Center New York University School of Medicine New York New York USA.
Alessandra FanciulliDepartment of Neurology Innsbruck Medical University Innsbruck Austria.ORCID https://orcid.org/0000-0002-2854-4179
Lucy Norcliffe-KaufmannDepartment of Neurology, Dysautonomia Center New York University School of Medicine New York New York USA.
Pam BowerMultiple System Atrophy Coalition McLean Virginia USA.
Gregor K WenningDepartment of Neurology Innsbruck Medical University Innsbruck Austria.
Horacio KaufmannDepartment of Neurology, Dysautonomia Center New York University School of Medicine New York New York USA.ORCID https://orcid.org/0000-0002-1851-9981

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: The Global Multiple System Atrophy Registry (GLOMSAR) was established in 2013. It is an online patient-reported contact registry open and free that relies on self-reported diagnosis by the patient or caregiver. Objectives: To report the demographics of patients enrolled in GLOMSAR and the results of an ancillary online symptom questionnaire. Methods: Patients enrolled in GLOMSAR were invited to complete a custom-designed online questionnaire about disease onset and symptom prevalence. Results: At the time of writing, there were 1083 participants in GLOMSAR, of which 33% (365) completed the questionnaire. The onset and frequency of most symptoms was similar to those reported in the literature in physician-reported studies. Some were understudied or not typically associated with multiple system atrophy (MSA), including reduced female sexual sensation (55%), forgetfulness (60%), pseudobulbar affect (37%), olfactory changes (36%), and visual hallucinations (21%). Conclusions: Patient-reported studies and ancillary online questionnaires are valid, underused research tools useful to advance our knowledge on understudied MSA features and highlight the patients' voice.

Indexed as

burdenmultiple system atrophypatient advocacy groupspatient registriessynucleinopathies

Identifiers

PMID36247899
PMCPMC9547130

What OpenQuestion holds

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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.