Rare Diseases in Ecuador: a harmonized nationwide dataset of hospital discharge and inpatient mortality observations, 2015–2024
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This dataset provides a harmonized, nationwide collection of hospital discharge and inpatient mortality observations associated with rare diseases in Ecuador from January 1, 2015, to December 31, 2024. It was developed to support epidemiological research, health services analysis, rare disease surveillance, and evidence-based public health planning. The database was compiled from national administrative hospital statistics maintained by the National Institute of Statistics and Censuses of Ecuador (INEC), using conditions included in the Ecuadorian Ministry of Public Health rare disease policy framework. The screening framework comprises 106 ICD-10 codes represented by 116 administrative diagnostic entries. Of these, 98 entries had recorded hospital discharge activity and 71 had recorded inpatient deaths. Additionally, 47 conditions were standardized through an ICD-10/Orphanet crosswalk to improve diagnostic terminology and international interoperability. During the 2015–2024 study period, the database documented 44,061 diagnosis-specific hospital discharge observations and 4,122 inpatient-death observations. The dataset includes: Annual hospital discharge and inpatient mortality observations from 2015 to 2024. Diagnostic classifications based on ICD-10 codes. Standardized disease terminology and available Orphanet identifiers. Age-stratified data covering infants, children, adolescents, and adults. Hospital utilization and mortality distributions by diagnostic category. National annual summaries and disease-specific aggregate counts. Supporting documentation, variable definitions, and data-quality considerations. Seven major diagnostic categories are represented: neurological disorders, congenital anomalies, metabolic disorders, connective tissue diseases, hematological disorders, cardiovascular disorders, and other conditions. Methodological considerations: The database contains aggregated diagnosis-specific administrative observations rather than individual patient records. Because persistent patient and hospital encounter identifiers were unavailable, repeated hospitalizations and multiple eligible diagnoses within the same hospitalization could not be identified or deduplicated. Consequently, these data should not be interpreted as counts of unique patients or hospital admissions, nor as estimates of disease incidence or population prevalence. The dataset is distributed in interoperable CSV and Microsoft Excel formats, accompanied by a data dictionary and methodological documentation to facilitate reproducibility and secondary analysis. Potential applications include descriptive epidemiology, temporal trend analysis, healthcare utilization research, rare disease surveillance, health system planning, and comparative international research. This resource establishes a standardized national baseline for examining the documented hospital burden of rare diseases in Ecuador and contributes to the development of more comprehensive and interoperable rare disease information systems. Geographic coverage: EcuadorTemporal coverage: 2015–2024Data source: National Institute of Statistics and Censuses of Ecuador (INEC)Keywords: Rare diseases; Ecuador; Hospital discharges; Inpatient mortality; Epidemiology; ICD-10; Orphanet; Health services research; Disease surveillance; Health policy.



