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Providing Data on Primary Immunodeficiencies

Founded in 2007, the IDF Survey Research Center was established on a strong history of over 12 years of IDF performing survey research. The findings from these early surveys are viewed as key resources of authoritative information for those in the primary immunodeficiency community. The critical nature of this quantitative data, collected from national surveys of patients and healthcare professionals, directly contributes in helping IDF fulfill its mission; improving the diagnoses, treatment and quality of life of persons with primary immunodeficiency diseases.

IDF survey data has been used effectively with the government in quantifying the impact of the immunoglobulin shortage several years ago, in helping change clinical trial design, and more recently in demonstrating the impact of reimbursement changes on patient care. This data is used by immunologists and other physicians in educational sessions that outline patient treatment and diagnosis experiences, as well as by industry in understanding the demand for, and efficacy of immunoglobulin replacement therapy. IDF survey data is often cited in medical journals, government sponsored reports, by media and has been the basis of several articles in peer-reviewed journals.

The IDF Survey Research Center continues to provide timely data and analysis on issues of importance to the primary immunodeficiency community. The Center is able to quickly generate accurate, effective and current information on issues concerning primary immunodeficiency. It provides a mechanism for ad hoc data collection and detailed analysis on issues such as Immunoglobulin replacement therapy reimbursement, opinions about products, and other emerging concerns.

IDF maintains the complete anonymity of all of our survey respondents. All respondent provided information is de-identified with all answers analyzed in the aggregate so as to prevent the identification of any one individual. Under no circumstances does IDF ever provide patient contact information to outside organizations without the patient’s prior consent. Click here to view the Immune Deficiency Foundation Research Code of Ethics.

If you would like more information, please contact the IDF Survey Research team at 800-296-4433 or e-mail.

Click here to see IDF's surveys.

Click here to learn about clinical trials and how you can get involved.