Research Impacts - Studies

Treatment Experiences and Preferences of Patients with Primary Immune Deficiency Diseases: National Survey

Release Date: 6/20/2003
Primary immune deficiency diseases represent a class of disorders in which there is an intrinsic defect in the human immune system (as distinct from immune disorder that are secondary to infection, chemotherapy, or some other external agent). In some cases, the body fails to produce any or enough antibodies to fight infection. In other cases, the cellular defenses against infection fail to work properly. The first medical recognition of primary immune deficiency diseases was only fifty years ago. Today, the World Health Organization recognizes more than 80 different primary immune deficiency diseases.

Although primary immune deficiency diseases are often described as rare disorders, the true population prevalence of these diseases, either individually or collectively, is not well established. The major health surveys conducted by the U.S. government, the National Health Interview Survey and the National Health and Nutrition Examination Survey, do not collect information on primary immune deficiency diseases. No national population survey has ever been undertaken in the United States to estimate the prevalence or the population characteristics of the disease. Hence, although the diseases are clinically described in the medical literature, there is no comprehensive portrait available of the patient with primary immune deficiency diseases.

The Immune Deficiency Foundation, a national non-profit, voluntary health organization dedicated to improving the treatment of the primary immune deficiency diseases through research and education, commissioned the first national survey of the state of primary immune deficiency diseases in the United States. The survey was designed by Schulman, Ronca and Bucuvalas, Inc. (SRBI), a national public opinion research organization. Nearly 3,000 persons who have been diagnosed with a primary immune deficiency disease participated in the survey. SRBI analyzed the survey data and prepared this report for the Foundation. The report on the First National Survey of Patients and Specialists was publicly released at the Immune Deficiency Foundation's twenty-year anniversary celebration in June 2001. The report on Treatment Experiences and Preferences of Patients with Primary Immune Deficiency Diseases was published in July 2003.

For more information on the Immune Deficiency Foundation, contact them at their website.