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Importance of Participating in Surveys and Research

July 25, 2018

A major focus of the Immune Deficiency Foundation (IDF) has always been to better understand patient experiences and improve outcomes for people with primary immunodeficiency diseases (PI). Since IDF mailed Primary Immune Deficiency Diseases in America: The First National Survey of Patients and Specialists in 1995, the tools used to conduct research have evolved. But one thing that remains constant, is that participation from the PI community is vital to its success.

Today, IDF offers many ways to get involved in research, including mail and web-based surveys in-person and telephone interviews, focus groups, links to clinical trials, and even a patient consented registry that is used by the medical community to examine diagnosis and treatment of PI.

The Survey Research Department at IDF looks forward to continuing to offer great expertise and skill and providing quick turn-around and results for the PI community, all while maintaining the complete anonymity of all survey respondents.

For more information about IDF’s PI research and how you can get involved, visit, or e-mail

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