Recognizing and Educating about Underdiagnosed Primary Immunodeficiency Disorders
Official title: Underdiagnosis of primary immunodeficiency disorders: Recognize and Educate
Funded at Boston Children's Hospital · NIH-11417951 · Data updated 2026-11-12
A patient-friendly look at a study aiming to find why primary immunodeficiency disorders are often missed and how to educate clinicians and patients to catch them earlier.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Boston Children's Hospital NIH-funded |
| Lab location | 1 site (Boston, United States) |
| Project start | September 19, 2022 |
| Project end | March 31, 2028 |
| Funding year | 2026 |
| Award (this year) | $785,639 |
| NIH project number | 5R01MD017816-05 |
| Project ID | NIH-11417951 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals suspected of having PID or with signs suggestive of immune disorders, and clinicians involved in PID care, particularly in diverse populations.
✕Less likely to help
People without immune concern or without exposure to the healthcare settings studied may not benefit directly.
What this research studies
This project uses electronic health records and patient insights to uncover patterns and factors behind PID underdiagnosis. It also pilots a targeted educational program to raise awareness of PID and its risk factors among clinicians and the public. The goal is to shorten delays in diagnosis and improve access to timely treatment for people with PID. By addressing disparities and sharing clear information, the study aims to reduce serious health consequences and deaths from untreated PID.
Why it matters
Potential benefit: If successful, the project could lead to faster PID diagnosis and better access to care for more patients.
How similar studies have gone: Past work has shown that educational interventions can improve recognition of immune disorders and reduce diagnostic delays, though gaps in disparities remain.
Where this research is happening
-
Boston Children's Hospital
Boston, United States Active
Researchers
- Principal investigator: Ong, Mei-Sing — Boston Children's Hospital
- Study coordinator: Ong, Mei-Sing
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About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.