ArticleJBMR plus2026
Health-related quality of life in French adults with X-linked hypophosphatemia: real-world data from the International XLH Registry.
Article in JBMR plus, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. It is linked to trial NCT03193476 (An International, Multicentre, Prospective, Non-interventional Observational Registry for Patients With X-Linked Hypophosphatemia), which is not on this map. Not yet cited in PubMed.
What it found
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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.
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.
An International, Multicentre, Prospective, Non-interventional Observational Registry for Patients With X-Linked Hypophosphatemia (XLH)
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
- Erratum issued
Authors and funding
12 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
X-linked hypophosphatemia (XLH) is a rare genetic condition in which excess fibroblast growth factor 23 causes renal phosphate wasting, leading to skeletal morbidities. Patients experience musculoskeletal pain, stiffness, and fatigue, with impaired physical function and health-related quality of life (HRQL). Burosumab has been available in France for the treatment of XLH since 2021; European treatment guidelines suggest use in adults with pseudofractures or with insufficient response and/or intolerance to oral phosphate supplements and active vitamin D. The International XLH Registry is collecting long-term observational data in a real-world setting from patients with XLH. Here, we report data from French adults from their first completion of the Short-Form 36 (SF-36) version 2 health survey, a measure of health-related quality of life. The analysis used data from 123 adults who completed the survey at least once (73% women; mean age at completion 42.5 yr [SD 13.4]; mean age at diagnosis 8.8 [12.6] yr). Group mean T-scores in the current International XLH Registry sample were <47 on all SF-36 scale and summary scores, indicating impaired functioning. Physical and mental component summary scores were similar (43.0 [SD 9.1] vs 43.4 [11.3]). Worse physical component summary scores were significantly related to older age (
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