ArticlePediatric nephrology (Berlin, Germany)2025
Adherence to delayed-release cysteamine in nephropathic cystinosis over time: data from the prospective CrYSTobs cohort study.
Article in Pediatric nephrology (Berlin, Germany), 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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
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Who cites it
1 citing paper in PubMed.
- Improving Lifelong Comprehensive Care Coordination in Nephropathic Cystinosis: Multidisciplinary Perspectives.Kidney international reports · 2026Review
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Authors and funding
7 authors.
Funding
Abstract
backgroundAdherence to cysteamine in nephropathic cystinosis (NC) remains challenging. A better adherence with delayed-release (DR) compared to immediate-release (IR) cysteamine at 1 year was previously shown. This study aimed to evaluate adherence to DR cysteamine at 2 years.
methodsTreatment adherence was assessed using a medication event monitoring system; adherence ranged from 0 (poor) to 2 (good). Leukocyte cystine level was measured at each 3-month visit. Long-term follow-up data (7 years after the end of the study) on self-reported adherence and quality of life was also obtained in a sub-group of patients.
resultsSeventeen patients with NC under DR cysteamine from three French centers were included at a median age of 13.9 (5.4-33.0) years. The median adherence score was 1.62 (0.03-1.98) over the 2-year follow-up, with 65% of patients having good adherence and 75% having partial or good adherence. No significant difference in leukocyte cystine level between baseline and 2 years was found (0.8 nmol vs. 0.4 nmol, respectively; difference in median of - 1.0 nmol; 95% CI - 0.7, 0.4; P = 0.64). Long-term follow-up data highlighted that no patient wished to switch back to IR cysteamine, as taking the medication twice rather than four times a day was easier.
conclusionsThis study found a fairly good adherence to DR cysteamine over time. Decreasing the number of intakes per day may improve adherence and limit the side effects of the drug, representing an additional argument in favor of its use in patients with cystinosis.
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