| 論文種別 | 原著(症例報告除く) |
| 言語種別 | 英語 |
| 査読の有無 | その他(不明) |
| 表題 | Current Status of National Haemophilia Registries in the Asia-Pacific Region: An AHAD-AP Registry Committee Survey. |
| 掲載誌名 | 正式名：Haemophilia : the official journal of the World Federation of Hemophilia 略 称：Haemophilia ISSNコード：13652516/13518216 |
| 掲載区分 | 国外 |
| 巻・号・頁 | pp.Online ahead of print |
| 著者・共著者 | Azusa Nagao, Huyen Tran, M Joseph John, Jameela Sathar, Novie Chozie, Jung Woo Han, Veena Selvaratnam, Mai Thi Nguyen, Chean Sophâl, Kumiko Ono, Te-Fu Weng, Darintr Sosothikul, Alok Srivastava |
| 発行年月 | 2026/08 |
| 概要 | INTRODUCTION:National registries are essential infrastructure for haemophilia and allied bleeding disorders, but registry development and international alignment across the Asia-Pacific region remain unclear.AIM:To evaluate the availability, governance, technical infrastructure, international engagement, and patient-facing digital functions of national haemophilia registries across the Asia-Pacific region.METHODS:The AHAD-AP Registry Committee conducted a structured survey of Country/Region/Territory (CRT) representatives. The questionnaire assessed registry status, funding and governance, international alignment, technical infrastructure, data-entry methods, and digital functions. Multiple responses from the same CRT were harmonized when needed.RESULTS:Nineteen individual responses representing 15 CRTs were consolidated into 15 CRT-level responses. Ten CRTs reported an active national registry, one a planned registry, three no national registry, of which two had centres participating in World Bleeding Disorders Registry (WBDR), and one hospital-based registry. Haemophilia was included in all, while VWD and other inherited coagulation factor deficiencies were included in 11 of 12. Mandatory registration was reported by 5 CRTs. Funding and governance structures varied across CRTs. Awareness of WBDR was reported by 12 of 15 CRTs, while dataset alignment, data submission, and technical integration were reported by 8, 4, and 1 CRTs, respectively. Manual data entry remained common (9/12), and patient-oriented digital functions, including infusion logs or related support tools, were reported by 10 of 12 registries.CONCLUSION:This survey represents the first large regional assessments of national haemophilia registry infrastructure across the Asia-Pacific region. Harmonized datasets, sustainable governance, technical integration, and patient-facing digital tools may support future registry development. |
| DOI | 10.1111/hae.70395 |
| PMID | 42670767 |