Founded in 2007, the IDF Survey Research Center is viewed as a key resource of authoritative information for those in the primary immunodeficiency (PI) community. The critical nature of the quantitative data collected by IDF directly contributes to improving the diagnosis, treatment, and quality of life of persons with PI. IDF survey data is often cited in medical journals, government-sponsored reports, and the media. The data has also been the focus of articles that appeared in peer-reviewed journals. Read about the history of IDF's survey research.
Health Insurance Surveys (2014, 2015, 2016)
To capture the impact the Patient Protection and Affordable Care Act (ACA), passed in 2010, had on those with PI, as well as to describe the general health insurance experiences of those impacted by PI, IDF conducted a series of web-based surveys of patients in our database in 2014, 2015, and 2016. View the results.
National Patient Survey Reports (1995, 2002, 2007, 2017)
These surveys are based on all persons known to IDF as having a diagnosis of one of the more than 450 different primary immunodeficiencies (PIs). Although these surveys are not probability samples so as to allow population estimates within known limits of sampling error, they provide the most representative samples currently available of patients with a rare disease.
National Patient Treatment Survey Reports (2002, 2008, 2013, 2018)
At the time of the first IDF national patient treatment survey in 1997, there was no current, comprehensive portrait of the patient with PI, their medical condition, and their treatment. Immunoglobulin replacement therapy is medically indicated for some, but not all primary immunodeficiencies. The IDF treatment surveys are based on persons known to IDF as individuals who use immunoglobulin replacement therapy in the treatment of their primary immunodeficiency. While these IDF treatment surveys are not probability samples so as to allow population estimates within known limits of sampling error, they provide the most representative samples currently available of patients with a rare disease from which we can examine treatment experiences.
IVIG Access Surveys (2006, 2007)
In 2006, IDF conducted three different national surveys in order to quantify reports from patients and healthcare providers that Medicare reimbursement for intravenous immunoglobulin (IVIG) was insufficient. These surveys included a national patient survey of patients from the IDF database, a survey of hospital pharmacists, and a national survey of immunologists conducted with the American Academy of Asthma, Allergy, and Immunology (AAAAI). The results from these surveys indicated that Medicare patients had more difficulty obtaining IVIG infusions and suffered more health problems than patients with private insurance.