Characteristics of orphan disease notification to Sivigila, Colombia, 2019.
DOI:
https://doi.org/10.33610/01229907.2021v3n2a1Keywords:
Orphan diseases, Rare diseases, Sivigila, ColombiaAbstract
Introduction: orphan diseases correspond to chronically debilitating health conditions of very low frequency, in Colombia the official source of information on orphan diseases is the national registry of Patients with orphan diseases, managed by the Ministry of Health and Social Protection. This document aims to describe the characteristics of orphan disease notification to Sivigila in Colombia during 2019.
Materials y methods: retrospective descriptive report of the results of routine surveillance of orphan - rare diseases in Colombia during 2019, the data were collected by Health Service Provider Institutions and Benefit Plan Management Companies at the local level (municipalities and districts) and reported to the National Institute of Health through the National Public Health Surveillance System - Sivigila. The data analysis was performed using descriptive statistics in terms of place and time; the variable name of the disease was included to establish differences in the distribution of the most frequently reported diseases
Results: during 2019, 17 743 cases of orphan diseases were reported to Sivigila, the territorial entities that reported the highest number of cases were Bogota, Antioquia and Cali, the most frequently reported diseases were: multiple sclerosis, congenital factor VIII deficiency, Von Willebrand disease, Guillain-Barre syndrome and sickle cell disease.
Conclusion: the increase in the notification of orphan diseases in Colombia may be related to the strengthening of Sivigila and the issuance of national regulations that establish notification as a requirement for the recovery of health technologies not financed with UPC resources.
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