IDF National Patient Survey Reports (1995, 2002, 2007)
These surveys are based on all persons known to IDF as having a diagnosis of one of the approximate 150 different primary immunodeficiency diseases. Although these surveys are not probability samples from which we can make population estimates within known limits of sampling error, they provide the most representative samples currently available of patients with a rare disease.
IDF National Patient Treatment Survey Reports (2002, 2008)
Although the medical recognition of primary immunodeficiency diseases had existed for almost 50 years, at the time of the first IDF national patient treatment survey in 1997, there was no current, comprehensive portrait of the patient with primary immunodeficiency disease, their medical condition and their treatment. Immunoglobulin replacement therapy is medically indicated for some, but not all primary immunodeficiency diseases. 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 from which we can make 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.
In 2006 the Immune Deficiency Foundation (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 data base, 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.
IDF survey data is often cited in medical journals, government sponsored reports and by the media. IDF survey data has also been the focus of articles that appeared in peer reviewed journals.
If you would like more information, please call IDF’s Director of Survey Research at 800.296.4433 or firstname.lastname@example.org.