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New report highlights pressing want to enhance thalassemia consciousness amongst Azerbaijan ladies

5.2% of the worldwide inhabitants carry hemoglobin abnormalities, leading to 300,000 to 400,000 youngsters born with extreme hemoglobinopathies yearly. Thalassemia, a hereditary hemoglobinopathy, happens in 4.4 out of each 10,000 dwell births, and is prevalent in Mediterranean coastal areas, Africa, the Center East, Southeast Asia, and southern China.

To facilitate larger understanding of thalassemia, a hereditary hemoglobinopathy, BGI Genomics at present launched its State of Thalassemia Consciousness Report. This report assesses the extent of information and attitudes associated to the related well being dangers, thalassemia provider screening, and genetic counseling for carriers. 1,847 feminine respondents from six nations with excessive thalassemia prevalence have been surveyed: Azerbaijan, China, Indonesia, Kuwait, Saudi Arabia, and Thailand.

67.6% of ladies in Azerbaijan take into account screening after studying about related thalassemia well being dangers and prices which is decrease than the worldwide common of 84.5%. If each companions are thalassemia carriers, 44.6% of ladies in Azerbaijan can persuade their companions to hunt genetic counseling and take into account preimplantation genetic prognosis (PGD) which can also be decrease than the worldwide common of fifty.9%.

Survey findings highlighted the pressing want to enhance consciousness, handle limitations, and improve entry to screening:

Most do not know a lot about thalassemia: 70.5% of ladies didn’t know a lot about thalassemia signs and the related well being dangers, with one other 14.4% indicating they by no means heard about thalassemia.

Better willingness to endure thalassemia screening with extra info: After studying concerning the well being dangers and excessive lifetime remedy prices related to thalassemia, 84.5% of ladies are extra keen to endure some type of thalassemia screening (premarital, pre-pregnancy, and prenatal exams).

Accessibility issues: Hospitals or companies close by that present screening providers (43.1%), price of screening providers (38.1%), and earlier than getting married or having youngsters (35.3%) are the highest causes that have an effect on the willingness to endure thalassemia screening.

Thalassemia carriers are extra open to genetic counseling: If each companions are thalassemia carriers, 50.8% of ladies can persuade their companions to hunt genetic counseling and take into account PGD. If ladies have obtained details about thalassemia from well being consciousness packages, this proportion rises to 59.5%.

This survey reveals that enhancing consciousness and accessibility are an necessary first step in thalassemia management packages. Area-specific screening and remedy packages, custom-made to align with native healthcare sources and cultural values, are additionally very important to determine thalassemia sufferers and carriers.”


Dr. Zhiyu Peng, Deputy GM, BGI Genomics

Dr. Androulla Eleftheriou, Thalassaemia Worldwide Federation Government Director, feedback, “Enhancing awareness is a crucial first step in promoting individual behavior changes and policy reforms, ultimately leading to improved prevention, control, and management of thalassemia. Screening services – a key component of any effective national control programme – needs to consider cultural and socio-economic backgrounds. We welcome BGI Genomics efforts and reaffirm our commitment to further expanding thalassemia awareness on a global scale.”

To learn the complete report, please click on to entry the BGI Genomics State of State of Thalassemia Consciousness Report 2023.

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