(Press-News.org) - Interviewing Dr. Androulla Eleftheriou, Executive Director at TIF, and Dr. Zhiyu Peng, Deputy GM at BGI Genomics, Head of the World Hemoglobinopathy Foundation
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.
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.
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.
Q1: After reading this report's key findings, what are the top findings that surprised your team?
Dr. Eleftheriou: This report offers insightful information on the degree of public knowledge and awareness of thalassemia in various affected countries.
Surprisingly, a substantial number of surveyed individuals displayed a suboptimal understanding of the disease, which could impede effective prevention and control efforts. The report's findings correspond with TIF's Global Thalassemia Review 2022, highlighting the necessity to strengthen community awareness about thalassemia and its impact.
Dr. Peng: Around 70 percent of respondents from these countries with high thalassemia prevalence indicate they do not know much about this disease. There's room for national thalassemia awareness programs to start earlier and remind people at 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.
Q2: In your view, how can we use this report's insights to strengthen preventative thalassemia measures?
Dr. Eleftheriou: Awareness is crucial for prevention, early detection, targeted therapy, and effective treatment.
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.
Dr. Peng: Enhancing awareness, accessibility, and affordability are critical first 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.
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.
Q3: Please briefly introduce your organization and some of your team's recent initiatives to enhance thalassemia awareness in surveyed countries, e.g., Azerbaijan, China, Indonesia, Kuwait, Saudi Arabia, and Thailand.
Dr. Eleftheriou: The TIF is a non-profit, non-governmental umbrella organization dedicated to improving the lives of patients with thalassemia and hemoglobin disorders globally.
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 has member associations in all the countries covered in this report (Azerbaijan, China, Indonesia, Kuwait, Saudi Arabia, and Thailand). It continues strengthening its efforts and programs to safeguard patients' rights and improve their care and benefits.
Dr. Peng: We have ongoing projects in most countries covered in this study, but we will cite examples from Azerbaijan and China. Azerbaijan is one of the countries with the highest prevalence rate of thalassemia.
Recognizing these challenges, 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, we organized a satellite symposium at the Azerbaijan Laboratory Medicine Congress & Lab Expo in May 2023.
In 2017, BGI Genomics founded the World Hemoglobinopathy Foundation to fight thalassemia and make the world a better place without this disease. Our company is committed to research to control hemoglobin diseases to cover screening, diagnosis, and treatment. 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.
About BGI Genomics:
BGI Genomics, headquartered in Shenzhen China, is the world's leading integrated solutions provider of precision medicine. Our services cover more than 100 countries and regions, involving more than 2,300 medical institutions. In July 2017, as a subsidiary of BGI Group, BGI Genomics (300676.SZ) was officially listed on the Shenzhen Stock Exchange.
END
Awareness, accessibility, and affordability are crucial for the early detection of thalassemia
2023-12-04
[Attachments] See images for this press release:
ELSE PRESS RELEASES FROM THIS DATE:
Complications from flu largely preventable with annual flu vaccine
2023-12-04
ARLINGTON, Va., BETHESDA, Md., CHICAGO and DALLAS, Dec. 4, 2023 — During National Influenza Vaccination Week (December 4-8, 2023), leading public health organizations are encouraging everyone to get a flu shot if they have not already done so. The flu is more than an inconvenience: it can lead to hospitalization, worsening of chronic medical conditions or even death. An annual flu vaccine is the best way to help prevent complications from the flu. [1]
The American Heart Association®, the American Lung Association,® the American ...
Soil drought weakens forest microclimatic cooling
2023-12-04
Scientists from Stockholm University have investigated the mechanisms that create cool microclimates beneath forest canopies during warm and dry summer days. The study reveals how canopy shading and water evaporation together create cooler forest microclimates compared to temperatures outside forests. The article is published in Agricultural and Forest Meteorology.
”The findings are alarming in the context of climate change as more frequent and more severe droughts may threaten the cooling functions of forests,” says Caroline Greiser, researcher at the Physical Geography Department, Stockholm ...
Study shows advanced footwear technology positively impacts elite sprint performances
2023-12-04
A scientific study published in PeerJ Life & Environment sheds light on the potential game-changing impact of advanced footwear technology (AFT) on elite sprint performances in track and field. The research, titled "The Potential Impact of Advanced Footwear Technology on the Recent Evolution of Elite Sprint Performances," reveals the significant strides made in sprint performance and suggests that AFT has played a pivotal role in these improvements.
Elite track ...
What's behind the holiday-suicide myth
2023-12-04
PHILADELPHIA – For more than two decades, the Annenberg Public Policy Center has tracked the ways in which news organizations erroneously link the year-end holiday season with suicide, perpetuating the false holiday-suicide myth. But as years of national data show, the winter holiday months usually have low average daily suicide rates, with December the lowest of all.
In our new media analysis, we find that of the newspaper stories during the 2022-23 holiday season that explicitly connected the holidays with suicide, 60% correctly debunked the myth while 40% incorrectly supported it.
But it’s not just the media that ...
More than a meteorite: New clues about the demise of dinosaurs
2023-12-04
What wiped out the dinosaurs? A meteorite plummeting to Earth is only part of the story, a new study suggests. Climate change triggered by massive volcanic eruptions may have ultimately set the stage for the dinosaur extinction, challenging the traditional narrative that a meteorite alone delivered the final blow to the ancient giants.
That’s according to a study published in Science Advances, co-authored by Don Baker, a professor in McGill University’s Department of Earth and Planetary Sciences.
The research team delved into volcanic eruptions of the Deccan Traps—a ...
INU scientists propose a model to predict personal learning performance for virtual reality-based safety training
2023-12-04
In Korea, occupational hazards are on the rise, particularly in the construction sector. According to a report on the ‘Occupational Safety Accident Status’ by Korea’s Ministry of Employment and Labor, the industry accounted for the highest number of accidents and fatalities among all sectors in 2021. To address this rise, the Korea Occupational Safety and Health Agency has been providing virtual reality (VR)-based construction safety content to daily workers as part of their educational training initiatives.
Nevertheless, ...
Placing nanoparticles in the palm of your hand
2023-12-04
Nanoparticles are super tiny―as small as one nanometer, or one billionth of a meter―and are of keen interest to materials scientists for their unique physical and chemical properties. They cannot be detected by the naked eye and require a highly specialized electron microscope to be seen.
In fact, advancements in imaging technologies through the 1990s and early 2000s are what made the field of nanoscience possible, says Anne Bentley, a faculty member in the Department of Chemistry at Lewis & Clark College in Portland, Oregon.
“I ...
Rice engineers tackle hard-to-map class of materials
2023-12-04
HOUSTON – (Dec. 4th, 2023) – The properties that make materials like semiconductors so sought after result from the way their atoms are connected, and insight into these atomic configurations can help scientists design new materials or use existing materials in new, unforeseen ways.
Rice University materials scientist Yimo Han and collaborators mapped out the structural features of a 2D ferroelectric material made of tin and selenium atoms, showing how domains ⎯ areas of the ...
Unravelling the mechanism of urticaria from eruption shapes
2023-12-04
The skin is the largest organ in the human body and plays an important role in maintaining homeostasis as well as protecting the body from the outside environment. Skin diseases can be life-threatening or heavily impair patients’ quality of life. Urticaria (also called “hives”) is common, affecting at least one in five people in their lifetime, and can persist for years or even decades. Many skin diseases are unique to humans, and their pathogenesis often remains unclear due to the lack of an appropriate experimental animal model and limited clinical data. One such human-specific disease is chronic spontaneous urticaria (CSU), which is characterized by the ...
New theory unites Einstein’s gravity with quantum mechanics
2023-12-04
A radical theory that consistently unifies gravity and quantum mechanics while preserving Einstein’s classical concept of spacetime is announced today in two papers published simultaneously by UCL (University College London) physicists.
Modern physics is founded upon two pillars: quantum theory on the one hand, which governs the smallest particles in the universe, and Einstein’s theory of general relativity on the other, which explains gravity through the bending of spacetime. But these two theories are in contradiction with each other and a reconciliation ...