ArticleCureus2026
Accuracy and Completeness of Online Patient Information on Nail-Patella Syndrome: A Pilot Cross-Sectional Study.
Article in Cureus, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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.
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.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundNail-patella syndrome is a rare autosomal dominant multisystem disorder with musculoskeletal, renal, and ocular manifestations. Patients and families may rely on online resources, but the completeness and accuracy of this information have not been well characterized. This study evaluated English-language online information about nail-patella syndrome.
methodsA structured cross-sectional pilot search conducted on August 6, 2026, identified 24 candidate domains. Fifteen independent patient-facing websites were included in the primary analysis. Pages were grouped by source type and assessed using a 15-item Nail-Patella Syndrome Specific Content Score (range 0-15) and an accuracy-completeness score in which each item was rated 0 (absent), 1 (present but incomplete or partly inaccurate), or 2 (present and broadly accurate; range 0-30). GeneReviews and peer-reviewed literature formed the reference standard.
resultsThe mean presence score was 13.2 of 15 (standard deviation 1.8; range 10-15), and the mean accuracy-completeness score was 23.7 of 30 (standard deviation 5.3; range 14-30). Government/non-profit websites had the highest mean accuracy-completeness score (26.0), followed by healthcare-provider (25.0), media/general-information (23.7), and commercial websites (20.0); differences were not statistically significant (Kruskal-Wallis H(3)=2.58, p=0.462). Nail, knee, and elbow manifestations were consistently described. Epidemiology was present on eight websites, while diagnosis/investigations, genetic counselling, and surveillance were each present on 11. Renal manifestations were mentioned on all websites, but only 10 were fully accurate; glaucoma was omitted by one website.
conclusionsThis pilot study identified specific gaps in online patient-facing information about nail-patella syndrome, particularly concerning diagnosis, renal and ocular surveillance, and balanced management. These findings highlight areas for improvement in patient resources rather than establishing a definitive ranking of individual websites.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.