New ASH initiatives to improve patient care of the long-overlooked Sickle Cell Disease
| Autor: | Venée N Tubman, Narla Mohandas, Charles S. Abrams |
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| Rok vydání: | 2023 |
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| Zdroj: | Blood Journal. |
| ISSN: | 1528-0020 0006-4971 |
| DOI: | 10.1182/blood.2023020145 |
| Popis: | Due to the unique biology of sickle cell disease, as well as the societal disadvantages and racial inequities suffered by these patients, individuals with sickle cell disease have not benefited from the same remarkable advances in care and therapeutics as other hematologic disorders. Life expectancy of individuals with sickle cell disease is shortened by approximately 20 years even with optimal clinical care, and infant mortality continues to be a major concern in low-income countries. As hematologists, we must do more. ASH and the ASH Research Collaborative have instituted a multi-pronged initiative to improve the lives of individuals living with this disease. Here we describe two components of this ASH initiative, the Consortium on Newborn Screening in Africa (CONSA) to improve early diagnosis of infants in low-resource countries, and the Sickle Cell Disease Clinical Trial Network to accelerate the development of more effective therapeutics and care for those with this disorder. The combination of sickle cell disease-focused initiatives, the ASH Research Collaborative, CONSA, and the Sickle Cell Clinical Trials Network, have enormous potential to dramatically alter the course of sickle cell disease worldwide. We believe that the timing is ripe to embark on these critical and worthwhile initiatives and improve the lives of individuals with this disease. |
| Databáze: | OpenAIRE |
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