Characterizing healthcare resource utilization in two rare diseases (Kleefstra syndrome and SLC6A1 epileptic encephalopathy) using multimodal real-world data

Characterizing healthcare resource utilization in two rare diseases (Kleefstra syndrome and SLC6A1 epileptic encephalopathy) using multimodal real-world data

Abstract Background The cumulative economic burden of rare diseases surpasses that of common conditions, yet patterns of healthcare resource utilization (HRU) across rare diseases remain poorly characterized. This study leverages multimodal data collected during clinical care and through surveys to...

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Bibliographic Details
Main Authors: Caitlin A. Nichols, Ella Nysetvold, Mike Jackson, Ainslie Tisdale, Christine M. Cutillo, Shannon Rego, Ashley N. Cogell, Nelson D. Pace, Kristina Cotter
Format: Article
Language:English
Published: BMC 2025-07-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Diagnosis
Healthcare resource utilization
Kleefstra syndrome
Observational study
Patient registry
Patient-reported outcomes
Online Access:https://doi.org/10.1186/s13023-025-03879-x
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