Evidence map›Paper›PMID 39855013›Full record

ArticleJournal of the neurological sciences2025

Awareness and care practices for rare neurologic diseases among senior neurologists: A global survey.

Dae-Gyu Jang, Antonio Federico, Masha G Savelieff, Wolfgang Grisold, Michelangelo Mancuso, Maria J Molnar, Eva L Feldman, Evan L Reynolds, World Federation of Neurology Subspecialist Group on Rare Neurologic Diseases

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of the neurological sciences, 2025. 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. 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

9 authors.

Dae-Gyu JangDepartment of Neurology, University of Michigan, Ann Arbor, MI 48109, USA; NeuroNetwork for Emerging Therapies, University of Michigan, Ann Arbor, MI 48109, USA. Electronic address: dajang@med.umich.edu.
Antonio FedericoChair, Subspecialist Group of Rare Neurologic Diseases, World Federation of Neurology, UK; Department Medicine, Surgery and Neurosciences, Medical School, University of Siena, Viale Bracci 2, 53100 Siena, Italy. Electronic address: antonio.federico@unisi.it.
Masha G SavelieffDepartment of Biomedical Sciences, University of North Dakota, Grand Forks, ND 58202, USA. Electronic address: masha.savelieff@ndus.edu.
Wolfgang GrisoldWorld Federation of Neurology, UK; Ludwig Boltzmann Institute for Experimental and Clinical Traumatology, Donaueschingenstraße 13, A-1200 Vienna, Austria. Electronic address: wolfgang.grisold@wfneurology.org.
Michelangelo MancusoNeurological Institute, Department of Clinical and Experimental Medicine, University of Pisa, 56126 Pisa, Italy. Electronic address: michelangelo.mancuso@unipi.it.
Maria J MolnarInstitute of Genomic Medicine and Rare Disorders, Semmelweis University, 1085 Budapest, Hungary. Electronic address: molnar.mariajudit@semmelweis.hu.
Eva L FeldmanDepartment of Neurology, University of Michigan, Ann Arbor, MI 48109, USA; NeuroNetwork for Emerging Therapies, University of Michigan, Ann Arbor, MI 48109, USA. Electronic address: efeldman@umich.edu.
Evan L ReynoldsDepartment of Neurology, University of Michigan, Ann Arbor, MI 48109, USA; NeuroNetwork for Emerging Therapies, University of Michigan, Ann Arbor, MI 48109, USA; Department of Epidemiology and Biostatistics, Michigan State University, East Lansing, MI 48824, USA. Electronic address: reyno335@msu.edu.
World Federation of Neurology Subspecialist Group on Rare Neurologic Diseases

Funding

Mapping the ALS Exposome to Gain New Insights into Disease Risk and PathogenesisR01ES030049 · NIEHS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI BATTERMAN, STUART A, FELDMAN, EVA LUCILLE · 2020 to 2024
$3.5M
Developing novel strategies for personalized treatment and prevention of ALS: Leveraging the global exposome, genome, epigenome, metabolome, and inflammasome with data science in a case/control cohortR01NS127188 · NINDS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI BATTERMAN, STUART A, FELDMAN, EVA LUCILLE · 2021 to 2024
$3.4M
Schwann Cell Senescence and the Secretome Provide a Unifying Mechanism for the Onset and Progression of Diabetic NeuropathyR01DK130913 · NIDDK · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI Eva Lucille Feldman, Junguk Hur · 2022 to 2026
$3.3M
Predicting complications of diabetes with longitudinal metabolic trajectoriesR00DK129785 · NIDDK · HENRY FORD HEALTH + MICHIGAN STATE UNIVERSITY HEALTH SCIENCES · PI Evan L Reynolds · 2024 to 2026
$745k
ATSDR CDC HHS R01 TS000327NIDDK NIH HHS R00 DK129785NIDDK NIH HHS R01 DK130913NIEHS NIH HHS R01 ES030049NINDS NIH HHS R01 NS127188
6 · The paper itself

Abstract

objectiveRare neurologic diseases (RNDs) are difficult to diagnose and treat due to their low prevalence and complex nature. This survey evaluated awareness and current care status of RNDs among esteemed neurologists affiliated with the World Federation of Neurology (WFN).

methodsA 34-question survey was distributed to renowned neurologists, including delegates from national neurology societies in the WFN Assembly, various WFN committees, and members of the Rare Neurologic Diseases Specialist group. Responses were stratified by geographical regions, including Africa, the Americas, Asia/Oceania, and Europe, and into four income groups based on the World Bank Indicator. Descriptive statistics summarized responses, stratified by geographical regions or income groups, and significant differences were assessed by Fisher's exact test.

resultsOf 190 invited neurologists, 64 responded (34 % response rate). Among respondents, 89 % agreed that RND patients should receive timely and effective care on par with more common neurological conditions. Additionally, 77 % of respondents overall thought most RNDs could be accurately diagnosed in their country. However, there were significant differences in the perceived ability of respondents' country of practice to diagnose RNDs by region, specifically in Africa (25 %), and by income of country of practice, specifically in the lower-income group (17 %).

conclusionsThis global survey highlights varying RND diagnosis and care by country socioeconomic status, suggesting potential disparities in resources and preparedness. To improve outcomes and quality-of-life for RND patients, efforts should focus on improving diagnostic capabilities, fostering collaboration among neurology centers, and promoting education on the unique challenges and treatment options of RNDs.

Indexed as

AwarenessHealth Knowledge, Attitudes, PracticeNervous System DiseasesNeurologistsRare DiseasesFemaleGlobal HealthHumansMaleNeurologySurveys and QuestionnairesAttitudesAwarenessCareDiagnosisKnowledgePractice

Identifiers

PMID39855013
PMCPMC11846688

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

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.