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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. 

Strong legacy of survey research 

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: 

  • Quantify the impact of a past immunoglobulin shortage. 
  • Change clinical trial design. 
  • Demonstrate the impact of reimbursement changes on patient care. 
  • Enhance educational sessions for immunologists and other physicians to more clearly outline patient treatment and diagnosis experiences. 
  • Aid the healthcare industry in understanding the demand for, and efficacy of, immunoglobulin replacement therapy.

Latest survey results

In 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.

Title slide for 2023 National Patient Survey report.

Browse previous findings

Unless otherwise noted, these surveys are not probability sampled so as to allow population estimates within known limits of sampling error.

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. 

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. 

Download fact sheets + report


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:

  • Out-of-pocket costs, premium costs, deductibles, copays/co-insurances.
  • Annual limits.
  • Essential health benefits.
  • Access to preferred therapy: product, site of care, and mode of infusion.
  • Ability to access specialists.

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

  • In field: November 14, 2014 – December 4, 2014
  • 9,133 invitations | 1,417 completed surveys

2015 survey

  • In field: December 4, 2015 – December 31, 2015
  • 10,532 invitations | 1,504 completed surveys

2016 survey

  • In field: November 30, 2016 – January 15, 2017
  • 11,198 invitations | 1,414 completed surveys

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.

Survey ethics

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.