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Survey research
The IDF Survey Research Center provides timely data and analysis on issues important to the primary immunodeficiency (PI) community.
The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
The IDF Survey Research Center provides timely data and analysis on issues important to the primary immunodeficiency (PI) community.
Since its founding in 2007, the IDF Survey Research Center has built a robust foundation of findings that are now considered authoritative resources for those in the primary immunodeficiency community. This critical quantitative data is collected from national surveys of patients, caregivers, and healthcare professionals. The research directly contributes to IDF's mission to improve the diagnosis, treatment, and quality of life of people affected by PI.
IDF survey data has been published in peer-reviewed journals and is often cited in academic papers, government-sponsored reports, and by the media. It has been used effectively to:
Help doctors and researchers better understand primary immunodeficiencies and the impact of immunoglobulin (Ig) replacement therapy by taking IDF’s National Ig Treatment Survey.
Participate todayIn 2023, the foundation conducted its sixth National Patient Survey to understand everything from how long it takes to be diagnosed to what conditions co-occur with PI.
Unless otherwise noted, these surveys are not probability sampled so as to allow population estimates within known limits of sampling error.
These surveys are based on all persons known to IDF as having a diagnosis of primary immunodeficiency (PI).
At the time of the first IDF national patient treatment survey in 1997, there was no current, comprehensive portrait of the patient with PI, their medical condition, and their treatment. Immunoglobulin replacement therapy is medically indicated for some, but not all primary immunodeficiencies.
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.
The results of this survey also informed the following journal article:
Health-Related Quality of Life in Adult Patients with Common Variable Immunodeficiency Disorders and Impact of Treatment (Published in Journal of Clinical Immunology, May 2017)
To capture the impact the Patient Protection and Affordable Care Act (ACA), passed in 2010, had on those with PI, as well as to describe the general health insurance experiences of those impacted by PI, IDF conducted a series of web-based surveys of patients in our database in 2014, 2015, and 2016.
IDF staff developed the IDF National Health Insurance Survey questionnaires. Each of the three individual surveys contained about 53 main questions, with an average completion time of approximately 25 minutes. Topics covered in the surveys included:
Each of the survey study protocols was individually and independently reviewed by Schulman IRB Associates. All three surveys received exemptions from IRB review and approval.
The IDF survey research team programmed, tested, piloted, refined, and fielded the surveys. All self-identified adults with PI and self-identified parents/caregivers of children with PI who also had a valid email address in IDF’s patient database received an invitation to participate. Survey participants were not offered incentives for their participation.
2014 survey | Executive summary
2015 survey
2016 survey
Funding for this survey project was provided in part by unrestricted grants from Grifols & Shire.
In 2006, 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 database, 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 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.
IDF offers a research grant program to support patient-oriented PI research, funded by dollars raised from IDF Walk for PI teams and supporters.
Clinical trials help researchers develop safe, effective products that treat PI symptoms and other medical issues with limited side effects.
USIDNET is a national registry of PI patients who have volunteered their medical information to help researchers answer important questions.
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
We foster a community that is connected, engaged, and empowered through advocacy, education, and research.
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