Evidence map›Paper›PMID 39777696›Full record

ArticleJournal of inherited metabolic disease2025

Progression of Spinal Cord Disease in Adult Men With Adrenoleukodystrophy.

Hemmo A F Yska, Marije Voermans, Eda Kabak, Marc Engelen

Abstract read
In one paragraph

Article in Journal of inherited metabolic disease, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

4 citing papers in PubMed.

  1. Observational
  2. Clinically Relevant Outcome Measures in Women With Adrenoleukodystrophy.Annals of clinical and translational neurology · 2026
    Review
  3. Article
  4. 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

4 authors.

Hemmo A F YskaDepartment of Neurology and Pediatric Neurology, Emma Children's Hospital, Amsterdam Leukodystrophy Center, Amsterdam University Medical Center, Amsterdam, The Netherlands.ORCID 0009-0002-7973-2724
Marije VoermansDepartment of Neurology and Pediatric Neurology, Emma Children's Hospital, Amsterdam Leukodystrophy Center, Amsterdam University Medical Center, Amsterdam, The Netherlands.
Eda KabakDepartment of Neurology and Pediatric Neurology, Emma Children's Hospital, Amsterdam Leukodystrophy Center, Amsterdam University Medical Center, Amsterdam, The Netherlands.
Marc EngelenDepartment of Neurology and Pediatric Neurology, Emma Children's Hospital, Amsterdam Leukodystrophy Center, Amsterdam University Medical Center, Amsterdam, The Netherlands.ORCID 0000-0002-5346-8497

Funding

ZonMw 016.196.310
6 · The paper itself

Abstract

This study presents the longest systematic prospective follow-up of spinal cord disease in adult male ALD patients to date. Standardized yearly quantitative data collection included scoring of the EDSS, SSPROM, 6-min walking test (6MWT), urological and quality of life questionnaires and vibration sense of the hallux. Progression rates were compared between patients with mild (EDSS ≤ 2.5) and moderate to severe (EDSS > 2.5) disability over a period of 7 years. Data from 79 patients was included. EDSS, SSPROM and 6MWT showed significant disease progression over time. The general progression pattern was linear. Stratified by disease severity, the increase in EDSS was 0.1 points per year in the low EDSS group and 0.2 points per year in the higher EDSS group. SSPROM decreased by -0.7 points per year in the low EDSS group and by -1.9 points per year in the higher EDSS group. 6MWT decreased by -9.3 m/year in the low EDSS group and by -18.2 m/year in the higher EDSS group. The rate of progression in patients with relatively severe disability was higher than in patients with mild disability. Clinical trials will therefore observe effects more rapidly in patients with more advanced disease.

Indexed as

AdrenoleukodystrophyDisease ProgressionQuality of LifeSpinal Cord DiseasesAdultFollow-Up StudiesHumansMaleMiddle AgedProspective StudiesSeverity of Illness IndexSurveys and QuestionnairesWalk TestYoung AdultDutch ALD cohortleukodystrophynatural historytrial

Identifiers

PMID39777696
PMCPMC11706703

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.