, Volume 51, Issue 1, pp 61-70
Date: 21 Sep 2011

Global study of primary immunodeficiency diseases (PI)—diagnosis, treatment, and economic impact: an updated report from the Jeffrey Modell Foundation

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Abstract

A large population of patients with recurring infections are undiagnosed or under diagnosed and Primary Immunodeficiency (PI) is more common than had been previously estimated. The results strongly indicate the measurable impact of Physician Education and Public Awareness in identifying patients with an underlying PI. The Jeffrey Modell Centers Network (JMCN) provides the infrastructure for referral, diagnosis and appropriate treatment. All disease classifications and identified defects increased significantly over the study period. Quality of Life for referred and diagnosed patients dramatically improved compared to undiagnosed patients. There is a substantial cost savings for diagnosed patients compared to undiagnosed, even if regular IgG is required. The SPIRIT® Software successfully identified patients with PI in a large database and at three pilot sites. The Software was successfully tested for specificity and sensitivity.

Jeffrey Modell Foundation: Vicki and Fred Modell established the Jeffrey Modell Foundation (JMF) in 1987, in memory of their son Jeffrey, who died at the age of fifteen from complications of Primary Immunodeficiency (PI)—a genetic condition that is chronic, serious, and often fatal. JMF is a global nonprofit organization dedicated to early diagnosis, meaningful treatments, and cures through research, physician education, public awareness, advocacy, patient support, and newborn screening. There are more than 100 Jeffrey Modell Diagnostic and Research Centers and 230 Referral Centers worldwide. The Foundation has established a Network of 490 expert immunologists in 64 countries spanning six continents. More information about PI can be found at http://www.info4pi.org, by contacting JMF at (212) 819-0200 or info@jmfworld.org.