For a study, researchers sought to promote awareness of primary immunodeficiencies (PI) so that patients might be better identified, diagnosed, and treated, lowering mortality and morbidity and enhancing the quality of life (QOL). The Jeffrey Modell Centers Network (JMCN) was the foundation for pursuing these objectives for more than 2 decades. The JMCN had 909 Expert Physicians working in 400 institutions across 316 locations in 86 countries on 6 continents. Following the IUIS Expert Committee’s Classification of PI, JMF prepared a survey for members of the JMCN to describe the patient population regularly, including treatment modalities and demographics. Data from physicians from 2021 was compared to data from 2018 and 2013. The study comprised a total of 300 JMF Physician Surveys from 681 physicians. This was a 75% response rate from physicians. There was a 96.3% rise in patients followed in the United States between 2013 and 2021 and an 86.1% increase globally. Patients with a specific PI deficiency increased by 46.6% in the US and 47.9% internationally during the same period. Since 2013, the number of patients getting IgG and HSCT has climbed by 110% and 201%. Early detection resulted in lower reported morbidity and mortality and lowered estimated healthcare costs. An increase in diagnosed and treated individuals with PI was seen in the global examination of physician-reported data. The significant increase within the JMCN demonstrated its influence. The developing JMCN acted as a unique and vital resource, offering the infrastructure for early diagnosis, optimal therapies, implementation of standard-of-care and best practices, and building a vast worldwide patient database. Through collaboration and connectivity, the JMCN provided a key platform that supported physician and patient education, awareness initiatives, and research developments, ultimately leading to improved outcomes and QOL for patients with PI. For more than 2 decades, the JMCN had gradually and significantly grown, and it has continued to significantly impact the area of immunology around the world.
Source:aacijournal.biomedcentral.com/articles/10.1186/s13223-022-00662-6
