Table · dataset · 2026
Table 1_Hereditary angioedema in Latin America: international recommendations, expert consensus, and reported implementation barriers.docx
Listed in ZivaHub and Deakin Research Online and DMU Figshare and HKU DataHub and Swinburne Figshare and DaYta Ya Rona and SUNScholarData and figshare and Loughborough Research Repository and GRANTS Data and UP Research Data Repository — shown once because both records carry DOI 10.3389/fphar.2026.1933477.s001
Background<p>Current international hereditary angioedema (HAE) guidelines and treat-to-target recommendations emphasize accurate diagnosis, early on-demand treatment, procedure-related short-term prophylaxis, individualized long-term prophylaxis (LTP), and routine assessment of disease control and quality of life.
Description
Evidence on implementation in Latin America remains limited. We aimed to assess concordance between international guidance and the consensus of a selected Latin American expert panel and to identify expert-reported implementation barriers.</p>Methods<p>A scientific committee developed and externally validated a 74-item questionnaire (domains summarized in Supplementary Table S1) and conducted a two-round Delphi process among Latin American HAE experts.
Consensus items were rated on a nine-point agreement scale, with consensus defined a priori as at least two-thirds of respondents scoring within a three-point band in the agreement or disagreement range. Descriptive items captured expert-reported diagnostic testing, treatment patterns, monitoring practices, and perceived implementation determinants. Consensus findings are summarized as meeting the prespecified threshold; descriptive findings are reported with item-specific n/N when available.
Read the rest (3 more)
Instrument validation (July-November 2024) showed high inter-rater agreement (Kendall W = 0.84; p < 0.001) and excellent internal consistency (Cronbach alpha = 0.92).</p>Results<p>Thirty experts from 10 countries completed the process (Argentina, Brazil, Chile, Colombia, Ecuador, Mexico, Panama, Peru, Uruguay, and Venezuela). The prespecified consensus threshold was met for core biochemical diagnostic work-up, selective genetic evaluation, first-line targeted LTP (pdC1-INH, lanadelumab, and berotralstat), continued availability of on-demand therapy, routine monitoring, and management of special populations.
The principal expert-reported implementation signal was limited feasibility: frequent or constant prophylaxis-supply interruptions were reported by 19/30 experts (63%), including 13/23 (57%) practicing in settings where public or insurance coverage was reported. Cost (19/30; 63%) and medicine availability (8/30; 27%) were the most frequently reported barriers. These reports were not independently verified against reimbursement, procurement, formulary, or inventory data.</p>Conclusion<p>Within this selected panel, expert consensus was broadly concordant with international HAE guidance.
Panelists reported barriers involving diagnostic testing, financing, medicine availability, and continuity of supply; however, these findings are perceptions and reported practices, not representative national or regional estimates or audited health-system data. They identify candidate implementation priorities that require confirmation through patient-level registries and objective access data.</p>
Links
Where it is published
- DOI doi.org/10.3389/fphar.2026.1933477.s001 ↗
DOI / persistent id · from zivahub uct ac za
Catalogue records · 1
- OAI-PMH record api.figshare.com/v2/oai?verb=GetRecord&metadataPrefix=oai_dc&identifier=oai%3Af… ↗
metadata API · from zivahub uct ac za
Topics
- From keywords
- Astronomy & Astrophysics · Chemistry · Chemistry · Computer Science & AI · Computer Science & AI · Earth & Environmental Science · Earth & Environmental Science · Earth & Environmental Science · Earth & Environmental Science · Earth & Environmental Science · Earth & Environmental Science · Earth & Environmental Science · Earth & Environmental Science · Earth & Environmental Science · Earth & Environmental Science · Earth & Environmental Science · Economics & Finance · Economics & Finance · Engineering · Engineering · Engineering · Engineering · Humanities · Humanities · Humanities · Humanities · Life Sciences · Life Sciences · Life Sciences · Life Sciences · Materials Science · Mathematics & Statistics · Medicine & Health · Medicine & Health · Medicine & Health · Medicine & Health · Medicine & Health · Medicine & Health · Medicine & Health · Medicine & Health · Medicine & Health · Medicine & Health · Medicine & Health · Ocean & Atmospheric Science · Psychology & Behavioral Science · Social Science · Social Science · Social Science · Social Science
Provenance · 11 source records, 56 field assertions
| Source | Key | Last seen | Raw |
|---|---|---|---|
| ZivaHub | oai:figshare.com:article/34039188 | 13 d ago | JSON v1 |
| Deakin Research Online | oai:figshare.com:article/34039188 | 13 d ago | JSON v1 |
| DMU Figshare | oai:figshare.com:article/34039188 | 13 d ago | JSON v1 |
| HKU DataHub | oai:figshare.com:article/34039188 | 12 d ago | JSON v1 |
| Swinburne Figshare | oai:figshare.com:article/34039188 | 12 d ago | JSON v1 |
| DaYta Ya Rona | oai:figshare.com:article/34039188 | 12 d ago | JSON v1 |
| SUNScholarData | oai:figshare.com:article/34039188 | 12 d ago | JSON v1 |
| figshare | oai:figshare.com:article/34039188 | 12 d ago | JSON v1 |
| Loughborough Research Repository | oai:figshare.com:article/34039188 | 12 d ago | JSON v1 |
| GRANTS Data | oai:figshare.com:article/34039188 | 11 d ago | JSON v1 |
| UP Research Data Repository | oai:figshare.com:article/34039188 | 11 d ago | JSON v1 |
| Field | Assertion | Extractor | Evidence |
|---|---|---|---|
| access_level | source · zivahub uct ac za | connector:zivahub_uct_ac_za@1.0.0 | |
| concepts[disease].local:disease:disease | enrichment · zivahub uct ac za | keyword-concept-rules@1.0.0 | title+description (75%) |
| concepts[field].local:field:astronomy | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:chemistry | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:chemistry | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:computer-science-ai | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:computer-science-ai | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · zivahub uct ac za | connector:zivahub_uct_ac_za@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · dro deakin edu au | connector:dro_deakin_edu_au@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · figshare dmu ac uk | connector:figshare_dmu_ac_uk@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · datahub hku hk | connector:datahub_hku_hk@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · figshare swinburne edu au | connector:figshare_swinburne_edu_au@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · dayta nwu ac za | connector:dayta_nwu_ac_za@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · scholardata sun ac za | connector:scholardata_sun_ac_za@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · grantsdata jst go jp | connector:grantsdata_jst_go_jp@1.0.0 | |
| concepts[field].local:field:economics-finance | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:economics-finance | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:engineering | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:engineering | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:engineering | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:engineering | mapping · dayta nwu ac za | connector:dayta_nwu_ac_za@1.0.0 | |
| concepts[field].local:field:humanities | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:humanities | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:humanities | mapping · dayta nwu ac za | connector:dayta_nwu_ac_za@1.0.0 | |
| concepts[field].local:field:humanities | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:life-sciences | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:life-sciences | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:life-sciences | mapping · dayta nwu ac za | connector:dayta_nwu_ac_za@1.0.0 | |
| concepts[field].local:field:life-sciences | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:materials-science | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:mathematics-statistics | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · figshare swinburne edu au | connector:figshare_swinburne_edu_au@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · scholardata sun ac za | connector:scholardata_sun_ac_za@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · datahub hku hk | connector:datahub_hku_hk@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · dro deakin edu au | connector:dro_deakin_edu_au@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · zivahub uct ac za | connector:zivahub_uct_ac_za@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · grantsdata jst go jp | connector:grantsdata_jst_go_jp@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · dayta nwu ac za | connector:dayta_nwu_ac_za@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · figshare dmu ac uk | connector:figshare_dmu_ac_uk@1.0.0 | |
| concepts[field].local:field:ocean-atmospheric | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:psychology-behavioral | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:social-science | mapping · dayta nwu ac za | connector:dayta_nwu_ac_za@1.0.0 | |
| concepts[field].local:field:social-science | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:social-science | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:social-science | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[modality].local:modality:tabular | enrichment · zivahub uct ac za | keyword-concept-rules@1.0.0 | title+description (65%) |
| description | source · zivahub uct ac za | connector:zivahub_uct_ac_za@1.0.0 | /metadata/dc/description |
| license | source · zivahub uct ac za | connector:zivahub_uct_ac_za@1.0.0 | /metadata/dc/rights |
| publication_date | source · zivahub uct ac za | connector:zivahub_uct_ac_za@1.0.0 | |
| title | source · zivahub uct ac za | connector:zivahub_uct_ac_za@1.0.0 | /metadata/dc/title |