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Prevalence and demographics of 331 rare diseases and associated COVID-19:
- PDF Prevalence and demographics of 331 rare diseases and associated COVID …
– URL: https://www.thelancet.com/pdfs/journals/landig/PIIS2589-7500(24)00253-X.pdf00253-X.pdf)
- Prevalence and demographics of 331 rare diseases and associated COVID …
- URL: https://www.thelancet.com/journals/landig/article/PIIS2589-7500(24)00253-X/fulltext00253-X/fulltext)
- Impact of the COVID-19 Pandemic on Peopel Living With Rare Diseases and…
- Excerpt:
– “A mild course of COVID-19 infections has been reported among patients with hereditary hemorrhagic telangiectasia in Italy, rare endocrine diseases in a European registry study, lysosomal storage diseases in London, and Gaucher disease in New York; in a large group of patients with rare diseases, the course of COVID-19 was generally mild.”
– “Fellow author of Professor Honghan Wu (honor,UCL Health Informatics Institute and Glasgow University) said: ’Early detection means previous intervention and better care and support. The ability to connect data gives us a deeper understanding, and allows us to find individuals who will slip through the internet.'”
– “The main writer Dr. Johangesen (UCL Institute of Health Informatics) said: ‘So much facts on the basic population level about rare diseases – such as general prevalence and gender and ethnic differences – is still unkown. This lack of data is especially problematic during Pandemic, because it is very important for health care planning.'”
- “For people who are vaccinated, three rare diseases with the highest risk of death related to covid-19 are round pemphigoids, autoimmune skin diseases; osteogenesis imperfecta, rare, genetic primary bone dysplasia, where bone cells grow abnormally; and Dominant Polycystic Kidney Disease Autosome, genetic kidney tubular disease.”
Contact Information:
- Mark Greaves
– Email: M.Greaves [at] ucl.ac.uk
– Phone: +44 (0) 20 3108 9485
– Address: University College London,Gower Street,London,WC1E 6BT
– Phone: (0) 20 7679 2000
Rare Diseases and COVID-19: An Expert Interview
Table of Contents
In the wake of the COVID-19 pandemic, the intersection of rare diseases and viral infections has become a critical area of study. We sat down with Dr. Johangesen, a specialist from the UCL Institute of Health Informatics, to discuss the prevalence and demographics of 331 rare diseases and thier association with COVID-19.
Understanding Rare Diseases and COVID-19
World-Today-News.com: Can you provide an overview of the impact of COVID-19 on patients with rare diseases?
Dr. Johangesen: Yes, the impact has been quiet varied. While some patients with rare diseases experienced a mild course of COVID-19, others faced significant challenges. For instance, patients with hereditary hemorrhagic telangiectasia in Italy, rare endocrine diseases in a European registry study, lysosomal storage diseases in London, and Gaucher disease in New York reported relatively mild symptoms.
The Role of data in Healthcare Planning
World-Today-News.com: how crucial is data in understanding and managing rare diseases during a pandemic?
Dr. Johangesen: Data is indispensable. So much about rare diseases at the basic population level—such as general prevalence, gender, and ethnic differences—is still unknown. This lack of data is especially problematic during a pandemic because it is crucial for healthcare planning. Early detection means previous intervention and better care and support. The ability to connect data gives us a deeper understanding and allows us to find individuals who might slip through the cracks.
Identifying High-Risk Rare Diseases
World-Today-News.com: Which rare diseases are notably vulnerable to severe outcomes from COVID-19?
Dr.Johangesen: For people who are vaccinated, three rare diseases with the highest risk of death related to COVID-19 are round pemphigoids, autoimmune skin diseases; osteogenesis imperfecta, a rare genetic primary bone dysplasia where bone cells grow abnormally; and dominant polycystic kidney disease autosome, a genetic kidney tubular disease.
Concluding Thoughts
World-Today-News.com: what are the main takeaways from your research and how can this data help in future healthcare planning?
Dr. Johangesen: The main takeaway is that understanding the prevalence and demographics of rare diseases is essential for effective healthcare planning, especially during a pandemic. our research highlights the importance of data collection and analysis to better support patients with rare diseases. It also underscores the need for continuous monitoring and early intervention to mitigate the impact of future health crises.
Contact Information
- Mark greaves
Email: M.Greaves [at] ucl.ac.uk
Phone: +44 (0) 20 3108 9485
Address: University College London, Gower Street, London, WC1E 6BT
Phone: (0) 20 7679 2000
