National registry of haemophilia and other coagulopathies: A multisector initiative in the Colombian Health System.

INTRODUCTION: Haemophilia is an orphan and high-cost disease worldwide and, especially in middle-income countries as Colombia. Given its burden of disease, in 2014, a national administrative registry was created to centralize demographic, clinical and economic information regarding to haemophilia and other coagulopathies. OBJECTIVE: To describe the building and implementation processes of the Colombian registry of haemophilia and other coagulopathies. METHODS: The 'consensus conference' methodology was used to design the registry. It was a multisector process, which included different actors of the health system (healthcare payers and providers, government institutions, academic and scientific organizations and patients). RESULTS: Colombia's national registry includes 95 variables, grouped in four sections: (1) sociodemographic data, (2) clinical condition, (3) economic costs, and (4) administrative updates. According to a resolution, stated by the Ministry of Health, payers and providers of healthcare must report annually to the registry the information of new and existing patients with coagulopathies. CONCLUSIONS: A national registry serves as an organized and interactive system for monitoring morbidity and mortality, assessing healthcare access and its impact on disease complications, as well as associated costs to medical assistance. Furthermore, registry information can guide a rational making decision process to use economic resources efficiently. On the other hand, data about orphan diseases can encourage health research and evidence-based care to improve quality of life and reduce associated disability.

[Kidney disease in Colombia: Priority for risk management]. / Enfermedad renal en Colombia: prioridad para la gestión de riesgo.

Objective To describe the demographic and clinical manifestations of patients with chronic kidney disease (CKD), arterial hypertension, and/or diabetes mellitus, and to determine the association between the presence of these pathologies and the development of CKD. Methods Analytic and cross-sectional study. The information, with a cutoff date of 30 June 2013, comes from the integrated database of CKD and patients with hypertension and diabetes, which the Colombian payer entities provided to the national fund for high-cost diseases (Cuenta de Alto Costo). A descriptive analysis was conducted and the prevalence of CKD and stage 5 CKD was determined. Crude odds ratios (OR) were used to determine the association between CKD and age, sex, and diabetes. Results 2,599,419 records were analyzed, of which 40% corresponded to people with CKD. Overall, 74.9% of the population had hypertension and 6.4% had diabetes. The prevalence of CKD was 2.81%, with 94.3% of patients in stages 1 to 3. In patients with diabetes, the risk of presenting CKD is 1.03 (confidence interval of 95% [CI95%] 1.016-1.043). Among persons over 60 years of age, the risk of CKD is 2.15 (CI95% 2.140-2.167). Conclusions 33.4% of patients with hypertension or diabetes have not been studied to determine the presence or absence of CKD. It is a priority to implement strategies for secondary and primary prevention in order to prevent the progression of CKD and reduce the prevalence of risk factors such as hypertension and diabetes.

Enfermedad renal en Colombia: prioridad para la gestión de riesgo / Kidney disease in Colombia: Priority for risk management

RESUMEN Objetivo El objetivo de este estudio fue describir las características demográficas y clínicas de los pacientes con enfermedad renal crónica (ERC), hipertensión arterial o diabetes mellitus y encontrar la asociación entre la presencia de estas patologías y el desarrollo de ERC. Métodos Estudio analítico y de corte transversal. La información procede de la base de datos única de ERC y de pacientes con hipertensión arterial y diabetes, que las entidades obligadas a compensar suministraron a la Cuenta de Alto Costo, reportada con corte al 30 de junio de 2013. Se realizó un análisis descriptivo y se determinó la prevalencia de ERC y enfermedad renal crónica en estadio 5 (ERC5). Se determinó la asociación entre ERC y edad, sexo y la diabetes mediante odds ratio (OR) crudos. Resultados Se analizaron 2 599 419 registros, de los cuales 40% correspondían a personas con ERC. El 74,9% de la población tenía hipertensión y 6,4% tenía diabetes. La prevalencia de ERC fue de 2,81%, y 94,3% de los pacientes se encontraba en estadios 1 a 3. El riesgo de presentar ERC en los pacientes con diabetes es 1,03 (intervalo de confianza de 95% [IC95%] 1,016 – 1,043). En los mayores de 60 años, el riesgo de ERC es 2,15 (IC95% 2,140 – 2,167). Conclusiones El 33,4% de pacientes con hipertensión o diabetes no han sido estudiados para determinar la presencia o ausencia de ERC. Es prioritario aplicar estrategias de prevención secundaria y primaria, para evitar la progresión de ERC y reducir la prevalencia de factores de riesgo como hipertensión y diabetes.

ABSTRACT Objective To describe the demographic and clinical manifestations of patients with chronic kidney disease (CKD), arterial hypertension, and/or diabetes mellitus, and to determine the association between the presence of these pathologies and the development of CKD. Methods Analytic and cross-sectional study. The information, with a cutoff date of 30 June 2013, comes from the integrated database of CKD and patients with hypertension and diabetes, which the Colombian payer entities provided to the national fund for high-cost diseases (Cuenta de Alto Costo). A descriptive analysis was conducted and the prevalence of CKD and stage 5 CKD was determined. Crude odds ratios (OR) were used to determine the association between CKD and age, sex, and diabetes. Results 2,599,419 records were analyzed, of which 40% corresponded to people with CKD. Overall, 74.9% of the population had hypertension and 6.4% had diabetes. The prevalence of CKD was 2.81%, with 94.3% of patients in stages 1 to 3. In patients with diabetes, the risk of presenting CKD is 1.03 (confidence interval of 95% [CI95%] 1.016-1.043). Among persons over 60 years of age, the risk of CKD is 2.15 (CI95% 2.140-2.167). Conclusions 33.4% of patients with hypertension or diabetes have not been studied to determine the presence or absence of CKD. It is a priority to implement strategies for secondary and primary prevention in order to prevent the progression of CKD and reduce the prevalence of risk factors such as hypertension and diabetes.