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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 |
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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 Linares, Adriana 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 |
format | article |
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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.</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 & Sons Ltd</rights><rights>2020 John Wiley & 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. 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><subject>blood coagulation disorders</subject><subject>Decision making</subject><subject>Disease</subject><subject>haemophilia</subject><subject>Hemophilia</subject><subject>inherited</subject><subject>Morbidity</subject><subject>Patients</subject><subject>Quality of life</subject><subject>rare diseases</subject><subject>registries</subject><issn>1351-8216</issn><issn>1365-2516</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><recordid>eNp1kU1P4zAQhi3Eio_CgT-ALHFZDgFP7Dgut6oCuhLaPSycIzeZNEZOXGwH1H-_LgUOSDsXv4fHj0bvEHIG7ArSXHcar0AAV3vkCLgssrwAub_NBWQqB3lIjkN4Zgx4zuQBOeS5muZCFUfE_9bRuEFb6nFlQvQb6lqahL1bd8YaTfXQUBc79LR2ejVat9axMxhu6Iz2o40mYB2dp2Yw0STZK6ZI0wc6d9b1S6MHukBtY0f_bkLE_oT8aLUNePrxTsjT3e3jfJE9_Ln_NZ89ZDUvuMpUiYpJbECIaY5p3WUDmiuGTBXTJbRS523daAatKktdFik1AgWIsgaZEp-Qnzvv2ruXEUOsehNqtFYP6MZQ5UIwKYWa8oRefEOf3ehTK1uqBCYBSpaoyx1VexeCx7Zae9Nrv6mAVdtDVKm36v0QiT3_MI7LHpsv8rP5BFzvgDdjcfN_U7WY3e6U_wCf2ZIW</recordid><startdate>202011</startdate><enddate>202011</enddate><creator>Alvis, Luisa Fernanda</creator><creator>Sánchez, Patricia</creator><creator>Acuña, Lizbeth</creator><creator>Escobar, Germán</creator><creator>Linares, Adriana</creator><creator>Solano, María Helena</creator><creator>Robledo, Sergio</creator><general>Wiley Subscription Services, Inc</general><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7T5</scope><scope>8FD</scope><scope>FR3</scope><scope>H94</scope><scope>P64</scope><scope>RC3</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0002-6670-3513</orcidid></search><sort><creationdate>202011</creationdate><title>National registry of haemophilia and other coagulopathies: A multisector initiative in the Colombian Health System</title><author>Alvis, Luisa Fernanda ; Sánchez, Patricia ; Acuña, Lizbeth ; Escobar, Germán ; Linares, Adriana ; Solano, María Helena ; Robledo, Sergio</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c3538-87e806ed14492e924bd1a380e0859b1f6a2fcda01f877a75a01d4e4147c16d4e3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>blood coagulation disorders</topic><topic>Decision making</topic><topic>Disease</topic><topic>haemophilia</topic><topic>Hemophilia</topic><topic>inherited</topic><topic>Morbidity</topic><topic>Patients</topic><topic>Quality of life</topic><topic>rare diseases</topic><topic>registries</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><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><collection>PubMed</collection><collection>CrossRef</collection><collection>Immunology Abstracts</collection><collection>Technology Research Database</collection><collection>Engineering Research Database</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - Academic</collection><jtitle>Haemophilia : the official journal of the World Federation of Hemophilia</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Alvis, Luisa Fernanda</au><au>Sánchez, Patricia</au><au>Acuña, Lizbeth</au><au>Escobar, Germán</au><au>Linares, Adriana</au><au>Solano, María Helena</au><au>Robledo, Sergio</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>National registry of haemophilia and other coagulopathies: A multisector initiative in the Colombian Health System</atitle><jtitle>Haemophilia : the official journal of the World Federation of Hemophilia</jtitle><addtitle>Haemophilia</addtitle><date>2020-11</date><risdate>2020</risdate><volume>26</volume><issue>6</issue><spage>e254</spage><epage>e261</epage><pages>e254-e261</pages><issn>1351-8216</issn><eissn>1365-2516</eissn><abstract>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.</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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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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