Awareness, Accessibility, and Affordability Are Crucial for the Early Detection of Thalassemia
Awareness, Accessibility, and Affordability Are Crucial for the Early Detection of Thalassemia
- Dr. Zhiyu Peng, Deputy GM at BGI Genomics, Head of the World Hemoglobinopathy Foundation, and Dr. Androulla Eleftheriou, Executive Director at TIF, analyze findings from the Global 2023 State of Thalassemia Awareness Report
-华大基因组副总经理、世界血红蛋白病基金会负责人彭志宇博士和TIF执行董事Androulla Eleftheriou博士分析了2023年全球地中海贫血状况宣传报告的调查结果
BANGKOK, Nov. 30, 2023 /PRNewswire/ -- Thalassemia, a hereditary hemoglobinopathy, occurs in 4.4 out of every 10,000 live births and is prevalent in Mediterranean coastal areas, Africa, the Middle East, Southeast Asia, and southern China.
曼谷，2023 年 11 月 30 日 /PRNewswire/ — 地中海贫血是一种遗传性血红蛋白病，每 10,000 名活产儿中有 4.4 人出现，在地中海沿海地区、非洲、中东、东南亚和中国南方很普遍。
Screening and antenatal diagnosis reduced the frequency of β-thalassemia in many Mediterranean countries. Focusing on other regions with high thalassemia prevalence, BGI Genomics has launched the Global 2023 State of Thalassemia Awareness Report, covering 1,847 women from Azerbaijan, China, Indonesia, Kuwait, Saudi Arabia, and Thailand, to assess the level of knowledge and attitudes related to the associated health risks, thalassemia carrier screening, and genetic counseling for carriers.
筛查和产前诊断降低了许多地中海国家β-地中海贫血的发生频率。华大基因组聚焦其他地中海贫血患病率高的地区，发布了《2023年全球地中海贫血状况宣传报告》，涵盖了来自阿塞拜疆、中国、印度尼西亚、科威特、沙特阿拉伯和泰国的1,847名女性，旨在评估与相关健康风险、地中海贫血携带者筛查和遗传咨询相关的知识水平和态度。
Dr. Androulla Eleftheriou, Executive Director at Thalassaemia International Federation (TIF), Dr. Zhiyu Peng, Deputy GM at BGI Genomics and Head of the World Hemoglobinopathy Foundation, shared their views on this report's findings to offer greater insight to improve thalassemia awareness.
地中海贫血病国际联合会（TIF）执行董事安德鲁拉·埃莱夫瑟里奥博士、华大基因组学副总经理兼世界血红蛋白病基金会负责人彭志宇博士分享了他们对本报告发现的看法，为提高地中海贫血意识提供了更深入的见解。
Dr. Eleftheriou noted that: "Surprisingly, a substantial number of surveyed individuals displayed a suboptimal understanding of the disease, which could impede effective prevention and control efforts. This report's findings correspond with TIF's Global Thalassemia Review 2022, highlighting the necessity to strengthen community awareness about thalassemia and its impact."
埃莱夫瑟里奥博士指出：”令人惊讶的是，大量受访者对这种疾病的了解并不理想，这可能会阻碍有效的预防和控制工作。该报告的发现与TIF的2022年全球地中海贫血报告一致，强调了加强社区对地中海贫血及其影响的认识的必要性。”
As around 70 percent of respondents from these countries with high thalassemia prevalence indicate they do not know much about this disease, Dr. Peng suggested: "There's room for national thalassemia awareness programs to start earlier and remind people at important milestones. For example, awareness programs could start in middle school and remind both men and women at milestones such as marriage, preparation for pregnancy, and birth." To ensure people know about the 'why' and 'how' of thalassemia screening, these programs should also cover carrier screening methods such as routine blood tests, hemoglobin electrophoresis, and genetic testing.
由于来自这些地中海贫血患病率高的国家的受访者中，约有70％的受访者表示他们对这种疾病知之甚少，彭博士建议：“国家地中海贫血宣传计划还有提早启动的余地，并在重要的里程碑上提醒人们。例如， 宣传计划可以从中学开始，提醒男性和女性注意结婚、准备怀孕和分娩等里程碑。”为了确保人们了解地中海贫血筛查的 “原因” 和 “方式”，这些计划还应涵盖携带者筛查方法，例如常规血液检查、血红蛋白电泳和基因检测。
Awareness is crucial for prevention, early detection, targeted therapy, and effective treatment. Dr. Eleftheriou commented that understanding a disease and its symptoms encourages key preventative measures, such as screenings and regular check-ups. Identifying knowledge gaps contributes to tailoring hemoglobinopathy prevention strategies and control initiatives to suit each country's social, economic, and cultural characteristics.
意识对于预防、早期发现、靶向治疗和有效治疗至关重要。Eleftheriou博士评论说，了解疾病及其症状可以鼓励采取关键的预防措施，例如筛查和定期检查。找出知识差距有助于调整血红蛋白病预防策略和控制举措，以适应每个国家的社会、经济和文化特征。
Which factors will affect your willingness to undergo thalassemia gene screening
哪些因素会影响你接受地中海贫血基因筛查的意愿
This report indicates enhancing awareness, accessibility, and affordability are critical steps in thalassemia control programs. Hospitals or agencies nearby that provide screening services (43.1 percent) and the cost of screening services (38.1 percent) are the top factors affecting the willingness to undergo thalassemia screening.
该报告表明，提高认识、可及性和可负担性是地中海贫血控制计划的关键步骤。附近提供筛查服务的医院或机构（43.1％）和筛查服务费用（38.1％）是影响接受地中海贫血筛查意愿的主要因素。
Dr. Peng shared that in Jiangxi, a Chinese province with a population of around 45 million, genetic testing is recommended for screening thalassemia carriers, further enhancing accessibility and reducing costs.
彭博士分享说，在拥有约4,500万人口的中国江西省，建议进行基因检测来筛查地中海贫血携带者，进一步提高可及性并降低成本。
The TIF is a non-profit, non-governmental umbrella organization dedicated to improving the lives of patients with thalassemia and hemoglobin disorders globally.
TIF是一个非营利性的非政府伞式组织，致力于改善全球地中海贫血和血红蛋白疾病患者的生活。
Collaborating with patient organizations, medical professionals, and international, regional, and national health authorities, TIF supports the development of new National Control Programmes and reinforces existing ones for the prevention and management of hemoglobinopathies worldwide.
TIF与患者组织、医疗专业人员以及国际、地区和国家卫生当局合作，支持制定新的国家控制计划，并加强现有的国家控制计划，以预防和管理全球血红蛋白病。
After noting that TIF has member associations in all the countries covered in this report (Azerbaijan, China, Indonesia, Kuwait, Saudi Arabia, and Thailand), Dr. Eleftheriou shared that: "TIF will continue strengthening its efforts and programs to safeguard patients' rights and improve their care and benefits."
埃莱夫瑟里奥博士指出，TIF在本报告涵盖的所有国家（阿塞拜疆、中国、印度尼西亚、科威特、沙特阿拉伯和泰国）都有成员协会，他分享说：“TIF将继续加强其努力和计划，以维护患者的权利并改善他们的护理和福利。”
In 2017, BGI Genomics founded the World Hemoglobinopathy Foundation to fight thalassemia and make the world a better place without this disease. The company has pioneered thalassemia genetic testing services based on next-generation sequencing (NGS) technology since 2013. Dr. Peng reiterated that the company is committed to research to control hemoglobin diseases to cover screening, diagnosis, and treatment.
2017年，华大基因组成立了世界血红蛋白病基金会，以对抗地中海贫血，让没有这种疾病的世界变得更美好。自2013年以来，该公司一直是基于下一代测序（NGS）技术的地中海贫血基因检测服务的先驱。彭博士重申，该公司致力于控制血红蛋白疾病的研究，包括筛查、诊断和治疗。
As part of this mission, the Azerbaijan Thalassemia Center and BGI Genomics sealed a Collaboration Agreement in September 2022 to improve thalassemia screening through genetic technology. To enhance awareness of local medical professionals, the company organized a satellite symposium at the Azerbaijan Laboratory Medicine Congress & Lab Expo in May 2023.
作为这项使命的一部分，阿塞拜疆地中海贫血中心和华大基因组学于2022年9月签署了一项合作协议，通过基因技术改善地中海贫血筛查。为了提高当地医疗专业人员的认识，该公司于2023年5月在阿塞拜疆实验室医学大会和实验室博览会上组织了一次卫星研讨会。
As of the end of June 2023, BGI Genomics has provided thalassemia genetic testing for over 1.4 million people and genetic therapy for six patients, eliminating their dependence on blood transfusion treatment.
截至2023年6月底，华大基因组已为超过140万人提供了地中海贫血基因检测，为6名患者提供了基因治疗，消除了他们对输血治疗的依赖。
译文内容由第三方软件翻译。