For the past decade, IDF has been the key resource of authoritative information for patients and their families, as well as the medical professionals who treat them. IDF's success is largely because of the critical nature of the quantitative data it has collected from national surveys of patients and medical professionals for the past decade. This survey data has been used effectively with the government in quantifying the impact of the IVIG 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 also 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 IVIG replacement. IDF Survey data is often cited in medical journals, government sponsored reports and by the media.
The IDF officially established its Survey Research Center in 2007 to provide timely and accurate data and analysis on issues of importance to the primary immunodeficiency community. Building on IDF's position and experience, the Survey Research Center is able to effectively generate accurate and current information on issues concerning primary immunodeficiency. It provides a mechanism for ad hoc data collection and analysis on issues such as IVIG reimbursement, opinions about subcutaneous products, and other emerging concerns. This information is essential for planning and regulatory purposes.
If you would like more information, please contact IDF's Director of Survey Research at 800.296.4433 or firstname.lastname@example.org.