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All Things Angioedema – Learning about angioedema with Dr. Thomas Buttgereit

ACARE, the Global Allergy and Asthma Excellence Network for Angioedema
All Things Angioedema – Learning about angioedema with Dr. Thomas Buttgereit
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  • Episode 37 – AI & Data Science in Angioedema Research
    In this episode, Thomas welcomes Felix Aulenbacher, a bioinformatician and statistician from ACARE Berlin, to discuss the role of data science, machine learning, and artificial intelligence (AI) in angioedema research. They discuss:🔹 How does data analysis help classify different types of angioedema? 🔹 What role do AI and machine learning play in identifying disease patterns? 🔹 How does the "10 Questions" tool assist in diagnosing angioedema? 🔹 How is AI revolutionizing medical research, and what are its limitations? Felix shares insights on the intersection of bioinformatics and medicine, the challenges of medical data analysis, and how AI is transforming the field of angioedema research. Key Learnings from the Episode Bioinformatics plays a crucial role in medical research, analyzing large datasets to uncover hidden patterns in diseases. Data standardization is essential—poorly formatted data can make analysis difficult and lead to incorrect conclusions. Machine learning models like Random Forest help classify different types of angioedema based on patient questionnaires. The "10 Questions" tool has been developed to quickly differentiate different types of angioedema including HAE, mast cell-mediated angioedema, and drug-induced angioedema. AI can enhance data analysis, but it requires careful validation—incorrect use can lead to misinformation. ChatGPT and AI tools assist with coding and data analysis, but human oversight is still essential. AIDUOS, a ChatGPT-based tool, has been developed for urticaria research, relying on verified medical publications. AI is not a threat to data analysts, but professionals must adapt to its evolving capabilities. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠⁠⁠⁠https://forms.office.com/e/ZWxx3D4Cmr
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  • Episode 36 – Mortality in HAE: The Silent Threat
    In this episode, Thomas welcomes Dr. Fernanda Minafra, allergist and immunologist at the Federal University of Minas Gerais, Brazil, to discuss one of the most concerning aspects of hereditary angioedema (HAE): mortality. They discuss:🔹 How often do HAE-related deaths occur? 🔹 Why is undiagnosed HAE a major risk factor? 🔹 What do global studies say about mortality rates? 🔹 What can be done to reduce HAE deaths worldwide? Dr. Minafra shares insights from her research, including a systematic review on HAE-related deaths and a study on mortality rates in Brazil. She highlights the urgent need for better diagnosis, access to treatment, and public health policies to prevent avoidable deaths. Join us for this crucial discussion on why early diagnosis and proper treatment are key to saving lives. Key Learnings from the Episode HAE-related deaths are often caused by asphyxiation due to laryngeal angioedema. HAE mortality rates remain high in many parts of the world, especially in developing countries. A systematic review found that 1 in 20 HAE patients has died from asphyxia. Undiagnosed patients are at much higher risk of fatal outcomes. Many death certificates fail to properly identify HAE as the cause of death. HAE patients who die from asphyxiation typically lose 20 years of life expectancy. Access to diagnostic tests and effective treatments is essential for preventing deaths. Global collaboration through ACARE centers is needed to improve mortality data collection and patient outcomes. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠⁠https://forms.office.com/e/ZWxx3D4Cmr
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  • Episode 35 – Dried Blood Spot: A Game Changer for HAE Diagnosis
    In this episode, Thomas welcomes Dr. Jane Wong from Queen Mary Hospital, Hong Kong, to discuss a groundbreaking method for diagnosing hereditary angioedema (HAE) in regions with limited laboratory access. Traditional tests like complement C4, C1 inhibitor levels and C1 inhibitor function are crucial but not widely available in many parts of the world, delaying diagnosis and treatment.They discuss:🔹 What is dried blood spot (DBS) testing? 🔹 How does DBS compare to conventional lab tests? 🔹 Can DBS be used for large-scale screening and family testing? 🔹 What are the limitations and future applications of DBS? Join us for an in-depth discussion on how this simple, cost-effective method can revolutionize HAE diagnosis and patient care worldwide. Key Learnings from the Episode:Traditional HAE testing (C4, C1 inhibitor levels and function) is limited in many regions, delaying diagnosis and treatment. Dried blood spot (DBS) testing offers a reliable, cost-effective alternative, requiring only a few drops of blood. DBS showed strong correlation with conventional lab results, making it a promising screening tool. DBS allows for easy at-home or community-based sample collection, overcoming logistical barriers. DBS can be used for family screening, identifying undiagnosed relatives in high-risk groups. The method is stable and easy to transport, requiring minimal laboratory infrastructure. More extensive studies are needed to validate DBS for broader population screening. Future applications may include genetic testing for HAE with normal C1 inhibitor cases. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠https://forms.office.com/e/ZWxx3D4Cmr
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  • Episode 34 – Unraveling Angioedema: The Complexity of HAE and Unknown Variants in Canada
    In this episode, Dr. Thomas Buttgereit speaks with Dr. Adil Adatia about the latest findings on hereditary angioedema (HAE) in Canada, focusing on the challenges in diagnosing and treating patients with normal C1 inhibitor levels. They explore the differences between well-known genetic variants, discuss the average diagnostic delay of over 10 years, and examine treatment approaches, including long-term prophylaxis and the role of estrogen as a trigger. Additionally, they highlight the need for standardized guidelines in diagnosing and managing this condition to better treatment response.Key Learnings from the EpisodeThe average diagnostic delay for hereditary angioedema with normal C1 inhibitor levels exceeds 10 years in Canada.Patients with normal C1 inhibitor function often experience different triggers, with estrogen and stress being more prominent compared to other angioedema variants. A significant heterogeneous group of patients exists, where genetic mutations have yet to be identified.Many patients require multiple long-term prophylaxis treatments, indicating a more severe disease course.Genetic testing has historically been limited, but recent efforts are increasing its role in diagnosis.The lack of standardized diagnostic criteria across Canada makes it difficult to classify and treat patients uniformly.Insurance coverage for treatments like omalizumab varies by province and county, making access to care inconsistent.There is a need for clear definitions of treatment trials and treatment failures to improve clinical decision-making.Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠https://forms.office.com/e/ZWxx3D4Cmr
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  • Episode 33 – Comorbidities in people with HAE
    What comorbidities are seen in people with HAE? Dr Linda Sundler Björkman joins Dr Thomas Buttgereit to discuss her research on comorbidities in HAE, including methodology, key findings, and the need for further research.Disclosure statement: Unrestricted research grant from CSL Behring. Honorars from Takeda, Biocryst and CSL Behring.Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: https://forms.office.com/e/ZWxx3D4Cmr
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Acerca de All Things Angioedema – Learning about angioedema with Dr. Thomas Buttgereit

Started by ACARE in 2023 within the ACARELevelUp program this podcast is an invaluable resource for health care professionals, and anyone interested in learning more about angioedema. Dr. Thomas Buttgereit, Head of the Study Center at Charité Berlin, discusses all forms of angioedema, their pathophysiology, burden and treatment strategies with experts from all over the world. All opinions expressed are those of the faculty. This content should not be taken as medical advice and is for informational purposes only. Learn more about ACARE here: https://acare-network.com/
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