Adherence to cysteamine in nephropathic cystinosis: A unique electronic monitoring experience for a better understanding. A prospective cohort study: CrYSTobs.
Ségolène GaillardLaurent RocheSandrine LemoineGeorges DeschênesDenis MorinChristine Vianey-SabanCécile Acquaviva-BourdainBruno RanchinJustine BacchettaBehrouz KassaiPatrice NonyEurielle BodénanValérie LaudyCécile RougesSetareh ZarrabianFabien SubtilCatherine MercierPierre CochatAurélia Bertholet-ThomasPublished in: Pediatric nephrology (Berlin, Germany) (2020)
Our data are the first describing a rather good adherence to cysteamine, decreasing in adolescents and adults. We described a potential interest of the delayed release formulation. Our data highlight the need for a multidisciplinary approach including therapeutic education and individualized approaches in NC patients transitioning to adulthood. Graphical abstract.
Keyphrases
- end stage renal disease
- electronic health record
- ejection fraction
- newly diagnosed
- chronic kidney disease
- young adults
- healthcare
- big data
- physical activity
- prognostic factors
- quality improvement
- peritoneal dialysis
- drug delivery
- depressive symptoms
- machine learning
- metabolic syndrome
- adipose tissue
- skeletal muscle
- artificial intelligence
- data analysis
- climate change