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Primary immune deficiency diseases in America: The fifth national survey of patients (2017)

March 19, 2018

To date, no federally funded health surveys in the United States (i.e., the National Health Interview Survey and the National Health and Nutrition Examination Survey) collect information on primary immunodeficiencies. As a result, the Immune Deficiency Foundation (IDF) has sought to fill this void by administering a national patient experience survey within the PI community. Since 1995, IDF has administered four National Patient Surveys (1995, 2002, 2007, 2013) exploring the state of primary immunodeficiencies in the United States. As with previous administrations of this survey, our goal was to gather updated data on patient diagnosis, family history of PI, health issues (e.g., infections, hospitalizations) prior to and after diagnosis, treatment (e.g., immunoglobulin replacement therapy, bone marrow transplant, prophylactic antibiotics) and current health status.

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