The national recoding of orphan diseases: a proposal directed to health care

Abstract

Introduction: The Asian continent in 1972 was the first to recognize orphan diseases, followed by Europe and later America. In 2010 Colombia since the 1392 law, interdisciplinary work has been noted, however, it is not enough for global knowledge. Objective: To carry out a prevalence analysis, using databases that are freely accessible to the general public, comparing them with the reports made by the entities in charge of the management of the data for the capture, diagnosis and management of orphan diseases in Colombia. Materials and methods: a cross-sectional study was carried out using data cubes The Comprehensive Social Protection Information System (SISPRO) and the microdata of the National Administrative Department of Statistics (DANE), prevalences are estimated, a heat map and a Regression are performed Simple and multiple Poisson with robust variance, adjusted for sex, age, life cycle and region. Results: Information was collected from 2015 to 2018. 3014555 were people treated for one of the 319 diagnoses chosen. The most frequent disease was Viral Warts (14.4%). in females (58.9%), Bogotá (28%) and the Andean region (71%) had the highest. There is a 2.03 times chance for an older adult to have an orphan disease. The highest mortality rate was in the Andean region (0.12%). Discussion: The data obtained in this study differ from those published by the control entities. Conclusions: Quantitative and mixed research should be promoted, as well as a recoding of the diagnoses identified as orphan disease.