National survey on clinical profile and management of patients with hereditary angioedema due to C1-Inhibitor deficiency in Colombia

National survey on clinical profile and management of patients with hereditary angioedema due to C1-Inhibitor deficiency in Colombia | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article National survey on clinical profile and management of patients with hereditary angioedema due to C1-Inhibitor deficiency in Colombia Oscar Correa-Jimenez, Margarita Olivares-Gomez, Mauricio Sarrazola Sanjuan, and 40 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9397085/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 7 You are reading this latest preprint version Abstract Background Hereditary angioedema (HAE) is a rare, often misdiagnosed disorder. Epidemiological data on this condition are scarce in Latin America, particularly in Colombia. This study aimed to describe the demographics, clinical features, and treatments of Colombian HAE patients to address data gaps. Methods A web-based survey (Sept 2021–Mar 2023) of Colombian physicians managing HAE patients collected anonymous data on demographics, clinical features, and treatments. Statistical analyses compared patients receiving long-term prophylaxis (LTP) versus those who did not. Results The survey included 42 physicians from 19 Colombian departments, covering 274 HAE patients. Median age at symptom onset was 13 years, with a diagnostic delay of 8 years. Most patients were female (59.85%) and had a family history of HAE (83.58%). Attacks mainly affected peripheral, abdominal, and facial areas; common triggers included stress, trauma, and menstruation. Hospitalization was reported by 46.24% of patients, with23.77% hospitalized in the past year and 4.96% requiring intubation. All had on-demand therapy, mainly icatibant (91.41%). Long-term prophylaxis was prescribed in 52.14% of cases, with danazol (66.67%), tranexamic acid (31.21%), and lanadelumab (17.02%). These patients had longer diagnostic delays and higher hospitalization rates compared to those not receiving prophylaxis (p<0.01 and p=0.01, respectively). Conclusions This study reveals significant diagnostic delays and treatment challenges for HAE in Colombia. Underreporting and geographic disparities suggest an underestimated prevalence. The findings underscore the urgent need for greater awareness, equitable access to therapies, and robust patient registries to address unmet needs and reduce the burden of HAE on affected individuals. Full Text Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Reviewers agreed at journal 19 May, 2026 Reviewers agreed at journal 18 May, 2026 Reviewers agreed at journal 26 Apr, 2026 Reviewers invited by journal 21 Apr, 2026 Editor assigned by journal 20 Apr, 2026 Submission checks completed at journal 20 Apr, 2026 First submitted to journal 12 Apr, 2026 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9397085","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":629834591,"identity":"c4af424a-c8c1-4c6a-8727-9fd644607477","order_by":0,"name":"Oscar Correa-Jimenez","email":"","orcid":"","institution":"National University of Colombia","correspondingAuthor":false,"prefix":"","firstName":"Oscar","middleName":"","lastName":"Correa-Jimenez","suffix":""},{"id":629834592,"identity":"73b0f484-8db4-4050-98c3-ff0221601d52","order_by":1,"name":"Margarita Olivares-Gomez","email":"data:image/png;base64,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","orcid":"","institution":"Clínica Medellín Poblado","correspondingAuthor":true,"prefix":"","firstName":"Margarita","middleName":"","lastName":"Olivares-Gomez","suffix":""},{"id":629834593,"identity":"4d4fed58-1d8d-45b2-8753-08c6eb10cb12","order_by":2,"name":"Mauricio Sarrazola Sanjuan","email":"","orcid":"","institution":"Sarrazola Alergia e Inmunologia IPS","correspondingAuthor":false,"prefix":"","firstName":"Mauricio","middleName":"Sarrazola","lastName":"Sanjuan","suffix":""},{"id":629834594,"identity":"701be484-83df-4c55-b03b-0c7033b58280","order_by":3,"name":"Jairo Antonio Rodriguez","email":"","orcid":"","institution":"South Colombian University","correspondingAuthor":false,"prefix":"","firstName":"Jairo","middleName":"Antonio","lastName":"Rodriguez","suffix":""},{"id":629834595,"identity":"09fbd096-8072-470e-b776-517d913c8a1d","order_by":4,"name":"Camilo Daza","email":"","orcid":"","institution":"AIMEDIC, S.A.S.","correspondingAuthor":false,"prefix":"","firstName":"Camilo","middleName":"","lastName":"Daza","suffix":""},{"id":629834596,"identity":"b20ab895-c151-4c64-8c84-e01811abbe1f","order_by":5,"name":"Jaime Ocampo","email":"","orcid":"","institution":"Fundación Santa Fe de Bogotá","correspondingAuthor":false,"prefix":"","firstName":"Jaime","middleName":"","lastName":"Ocampo","suffix":""},{"id":629834597,"identity":"67e24676-4dad-4513-9148-cd6bc45c746b","order_by":6,"name":"Alejandro Carreño","email":"","orcid":"","institution":"Centro de Alergologia Alejandro Carreño","correspondingAuthor":false,"prefix":"","firstName":"Alejandro","middleName":"","lastName":"Carreño","suffix":""},{"id":629834598,"identity":"e139c910-3a05-4597-b6ec-c0bba44420c4","order_by":7,"name":"Franklin Torres-Jimenez","email":"","orcid":"","institution":"Centro de Alergologia Alejandro Carreño","correspondingAuthor":false,"prefix":"","firstName":"Franklin","middleName":"","lastName":"Torres-Jimenez","suffix":""},{"id":629834599,"identity":"ad7cb4b2-3764-4c8c-ad0c-ac8b3e99be3f","order_by":8,"name":"Julian E. 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Epidemiological data on this condition are scarce in Latin America, particularly in Colombia. This study aimed to describe the demographics, clinical features, and treatments of Colombian HAE patients to address data gaps.\u003c/p\u003e\n\u003cp\u003eMethods\u003c/p\u003e\n\u003cp\u003eA web-based survey (Sept 2021–Mar 2023) of Colombian physicians managing HAE patients collected anonymous data on demographics, clinical features, and treatments. Statistical analyses compared patients receiving long-term prophylaxis (LTP) versus those who did not.\u003c/p\u003e\n\u003cp\u003eResults\u003c/p\u003e\n\u003cp\u003eThe survey included 42 physicians from 19 Colombian departments, covering 274 HAE patients. Median age at symptom onset was 13 years, with a diagnostic delay of 8 years. Most patients were female (59.85%) and had a family history of HAE (83.58%). Attacks mainly affected peripheral, abdominal, and facial areas; common triggers included stress, trauma, and menstruation. Hospitalization was reported by 46.24% of patients, with23.77% hospitalized in the past year and 4.96% requiring intubation. All had on-demand therapy, mainly icatibant (91.41%). Long-term prophylaxis was prescribed in 52.14% of cases, with danazol (66.67%), tranexamic acid (31.21%), and lanadelumab (17.02%). These patients had longer diagnostic delays and higher hospitalization rates compared to those not receiving prophylaxis (p\u0026lt;0.01 and p=0.01, respectively).\u003c/p\u003e\n\u003cp\u003eConclusions\u003c/p\u003e\n\u003cp\u003eThis study reveals significant diagnostic delays and treatment challenges for HAE in Colombia. Underreporting and geographic disparities suggest an underestimated prevalence. The findings underscore the urgent need for greater awareness, equitable access to therapies, and robust patient registries to address unmet needs and reduce the burden of HAE on affected individuals.\u003c/p\u003e","manuscriptTitle":"National survey on clinical profile and management of patients with hereditary angioedema due to C1-Inhibitor deficiency in Colombia","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-04-29 20:21:43","doi":"10.21203/rs.3.rs-9397085/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewerAgreed","content":"292899525194023124669473796317150124506","date":"2026-05-19T18:34:09+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"132632329956823784380843184624861272263","date":"2026-05-18T12:52:06+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"240488836500789378981293160273278261616","date":"2026-04-26T14:56:17+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-04-21T14:18:28+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-04-20T22:16:01+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-04-20T22:15:28+00:00","index":"","fulltext":""},{"type":"submitted","content":"Immunologic Research","date":"2026-04-12T23:00:30+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"immunologic-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"imre","sideBox":"Learn more about [Immunologic Research](http://link.springer.com/journal/12026)","snPcode":"12026","submissionUrl":"https://submission.nature.com/new-submission/12026/3","title":"Immunologic Research","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"af207bbc-4640-4725-ba90-c9c3c5a92e79","owner":[],"postedDate":"April 29th, 2026","published":true,"recentEditorialEvents":[{"type":"reviewerAgreed","content":"292899525194023124669473796317150124506","date":"2026-05-19T18:34:09+00:00","index":34,"fulltext":""},{"type":"reviewerAgreed","content":"132632329956823784380843184624861272263","date":"2026-05-18T12:52:06+00:00","index":33,"fulltext":""}],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-29T20:21:43+00:00","versionOfRecord":[],"versionCreatedAt":"2026-04-29 20:21:43","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9397085","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9397085","identity":"rs-9397085","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}