Skip to main content
IDF logo
Person using pen and clipboard to fill out paperwork.

2023 National Patient Survey

In 2023, IDF surveyed more than 1100 patients with primary immunodeficiency (PI) to understand everything from how long it takes to be diagnosed to what conditions co-occur with PI.

Who took the survey?

1,177 individuals completed the survey between January and April 2023. Note that because not every respondent answered every question, the number of respondents who answered each question is given for each analysis (n=).

  • The most reported diagnoses were common variable immune deficiency (CVID; 62%), hypogammaglobulinemia (10%), and specific antibody deficiency (9%).
  • 93% of patients identified as white, 3% identified as two or more races or ethnicities, 2% identified as Hispanic/Latino, 1% identified as Black/American African, 0.5% identified as American Indian/Alaska Native, and 0.2% identified as Asian/Pacific Islander.
  • Patients ranged in age from 5-91 years old, with a median age of 61 years old.
  • 13.9% of patients were male at birth, while 86% were female and 0.1% were intersex at birth.
Demographics of individuals who took the 2023 IDF National Patient Survey.
Diagnoses, race/ethnicity, age, and sex at birth of individuals who took the 2023 National Patient Survey.

Explore survey results

Explore select 2023 National Patient Survey results using this interactive dashboard (note that the dashboard works best on laptop or desktop computers). How to use the dashboard:

  • Use the slider at the bottom right to zoom in or the double-headed diagonal arrow to view full screen.
  • Navigate through three pages of data (Getting diagnosed, Treatment, and Health and other conditions) using the arrows in the bottom grey bar.
  • Interested in a particular group of respondents? Filter the data on each page using the navy blue dropdown menus at the top. PROMIS General Mental and Physical Health scores are binned for the filters:
    • PROMIS General Mental Health scores: Poor < 29; Fair = 29-39.9; Good = 40-47.9; Very Good = 48-55.9; Excellent > 55.9.
    • PROMIS General Physical Health scores: Poor < 35; Fair = 35-41.9; Good = 42-49.9; Very Good = 50-57.9; Excellent > 57.9.

Thank you to our survey participants!

We could not generate these insights without your contributions. Interested in participating in the next survey? Make sure you get an invitation by signing up for an IDF account!

This page contains general medical and/or legal information that cannot be applied safely to any individual case. Medical and/or legal knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical and/or legal advice.