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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...

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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
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cited_by cdi_FETCH-LOGICAL-c3538-87e806ed14492e924bd1a380e0859b1f6a2fcda01f877a75a01d4e4147c16d4e3
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container_title Haemophilia : the official journal of the World Federation of Hemophilia
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creator Alvis, Luisa Fernanda
Sánchez, Patricia
Acuña, Lizbeth
Escobar, Germán
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Solano, María Helena
Robledo, Sergio
description 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.
doi_str_mv 10.1111/hae.14138
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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.</description><identifier>ISSN: 1351-8216</identifier><identifier>EISSN: 1365-2516</identifier><identifier>DOI: 10.1111/hae.14138</identifier><identifier>PMID: 32892485</identifier><language>eng</language><publisher>England: Wiley Subscription Services, Inc</publisher><subject>blood coagulation disorders ; Decision making ; Disease ; haemophilia ; Hemophilia ; inherited ; Morbidity ; Patients ; Quality of life ; rare diseases ; registries</subject><ispartof>Haemophilia : the official journal of the World Federation of Hemophilia, 2020-11, Vol.26 (6), p.e254-e261</ispartof><rights>2020 John Wiley &amp; Sons Ltd</rights><rights>2020 John Wiley &amp; Sons Ltd.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c3538-87e806ed14492e924bd1a380e0859b1f6a2fcda01f877a75a01d4e4147c16d4e3</citedby><cites>FETCH-LOGICAL-c3538-87e806ed14492e924bd1a380e0859b1f6a2fcda01f877a75a01d4e4147c16d4e3</cites><orcidid>0000-0002-6670-3513</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27923,27924</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32892485$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Alvis, Luisa Fernanda</creatorcontrib><creatorcontrib>Sánchez, Patricia</creatorcontrib><creatorcontrib>Acuña, Lizbeth</creatorcontrib><creatorcontrib>Escobar, Germán</creatorcontrib><creatorcontrib>Linares, Adriana</creatorcontrib><creatorcontrib>Solano, María Helena</creatorcontrib><creatorcontrib>Robledo, Sergio</creatorcontrib><title>National registry of haemophilia and other coagulopathies: A multisector initiative in the Colombian Health System</title><title>Haemophilia : the official journal of the World Federation of Hemophilia</title><addtitle>Haemophilia</addtitle><description>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. 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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.</abstract><cop>England</cop><pub>Wiley Subscription Services, Inc</pub><pmid>32892485</pmid><doi>10.1111/hae.14138</doi><tpages>8</tpages><orcidid>https://orcid.org/0000-0002-6670-3513</orcidid></addata></record>
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source Wiley:Jisc Collections:Wiley Read and Publish Open Access 2024-2025 (reading list)
subjects blood coagulation disorders
Decision making
Disease
haemophilia
Hemophilia
inherited
Morbidity
Patients
Quality of life
rare diseases
registries
title National registry of haemophilia and other coagulopathies: A multisector initiative in the Colombian Health System
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