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

• Published in: Haemophilia : the official journal of the World Federation of Hemophilia 2020-11, Vol.26 (6), p.e254-e261
• Main Authors: Alvis, Luisa Fernanda, Sánchez, Patricia, Acuña, Lizbeth, Escobar, Germán, Linares, Adriana, Solano, María Helena, Robledo, Sergio
• Format: Article
• Language: English
• Subjects: blood coagulation disorders; Decision making; Disease; haemophilia; Hemophilia; inherited; Morbidity; Patients; Quality of life; rare diseases; registries
• ISSN: 1351-8216; 1365-2516
• DOI: 10.1111/hae.14138

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.