Modell Vicki, Knaus Megan, Modell Fred, Roifman Chaim, Orange Jordan, Notarangelo Luigi D
Jeffrey Modell Foundation, 780 Third Avenue, 47th Floor, New York City, NY, 10017, USA.
Immunol Res. 2014 Oct;60(1):132-44. doi: 10.1007/s12026-014-8498-z.
Primary immunodeficiencies (PI) are defects of the immune system that cause severe infections if not diagnosed and treated appropriately. Many patients with PI are undiagnosed, under-diagnosed, or misdiagnosed. Over the last decade, the Jeffrey Modell Foundation has implemented a Physician Education and Public Awareness Campaign (PEPAC) to raise awareness, assure early diagnosis, appropriate treatment, and management, with the overall goal to reduce morbidities and mortalities related to PI. In order to evaluate the PEPAC program, data are requested annually from physician experts within the Jeffrey Modell Centers Network (JMCN). The JMCN, consisting of 556 expert physicians, at 234 academic institutions, in 196 cities, and 78 countries spanning six continents, provides the infrastructure for referral, diagnosis, and appropriate treatment for patients with PI. In addition, the JMCN has made a significant contribution to the field of immunology with the discovery of new genes at the centers. These advancements have led to an overall better understanding of the immune system and will continue to improve quality of life of those with PI.
原发性免疫缺陷病（PI）是免疫系统的缺陷，如果不进行适当的诊断和治疗，会导致严重感染。许多PI患者未被诊断、诊断不足或误诊。在过去十年中，杰弗里·莫德尔基金会开展了一项医生教育和公众意识宣传活动（PEPAC），以提高认识，确保早期诊断、适当治疗和管理，总体目标是降低与PI相关的发病率和死亡率。为了评估PEPAC项目，每年都向杰弗里·莫德尔中心网络（JMCN）内的医生专家索取数据。JMCN由分布在六大洲78个国家、196个城市的234个学术机构中的556名专家医生组成，为PI患者提供转诊、诊断和适当治疗的基础设施。此外，JMCN通过在各中心发现新基因，为免疫学领域做出了重大贡献。这些进展使人们对免疫系统有了更全面的了解，并将继续改善PI患者的生活质量。
