Understanding PFAPA and Other Tonsil Disorders

This study is looking into Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis (PFAPA) syndrome and other tonsil disorders. Researchers want to understand what causes these conditions by studying genetics (your inherited traits), immunology (how your body's defense system works), and microbes (tiny living things like bacteria). They will collect blood and other samples from people with PFAPA or other tonsil disorders to find genetic risk factors and learn more about the immune system and the types of microbes present. The study aims to identify genetic differences and understand how the body responds to these conditions. This is an observational study, meaning no specific treatments are being tested. It is open to people aged 1 month to 99 years who have PFAPA or other tonsil disorders, or symptoms consistent with them.

Study design
This is an observational study planning to enroll 1500 participants. It is not specified if it is randomized or blinded.
What's involved
Participants will be screened, and their medical records will be reviewed. Researchers will collect blood, saliva, buccal swabs, oropharyngeal swabs, nasopharyngeal swabs, nasopharyngeal wash, and/or stool samples. If a tonsillectomy or adenoidectomy is planned, leftover tissue may also be collected.
Compensation
Not stated in the trial record.
Follow-up
The study aims to identify genetic risk variants and characterize clinical outcomes and microbiota throughout the study.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT05656365

Evaluating the Genetics and Immunology of Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis (PFAPA) Syndrome and Other Tonsil Disorders

Recruiting
Not specifiedAges 1–99Observational
National Institute of Allergy and Infectious Diseases (NIAID)
~1,500 participants
Updated 2026-04-08 on ClinicalTrials.gov

At a glance

Recruiting sites
2 of 3 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Identify genetic risk variants for PFAPA and other tonsil disorders
Measured over Throughout study
+3 more outcomes measured
Periodic Fever, Aphthous Stomatitis, Pharyngitis, And Cervical Adenitis (Pfapa)
Obstructive Sleep Apnea
Tonsillitis
Tonsil Disorder
Sleep Disordered Breathing
3 sites across 3 states
District of Columbia1
Indiana1
Maryland1
  • Kalpana Manthiram, M.D. · PRINCIPAL_INVESTIGATOR · National Institute of Allergy and Infectious Diseases (NIAID)

Opens a ready-to-send draft in your own email app — review before sending.

  • Identify genetic risk variants for PFAPA and other tonsil disordersThroughout study

    To collect samples to understand the immunologic mechanisms and genetic and microbial risk factors for PFAPA and other tonsil disorders

  • Characterize clinical outcomes following tonsillectomy and other clinically indicated treatments.Throughout study

    To collect samples to understand the immunologic mechanisms and genetic and microbial risk factors for PFAPA and other tonsil disorders

  • Characterize the tonsillar/adenoid, oral, nasal and/or stool microbiota in people with PFAPA and other tonsil disordersThroughout study

    To collect samples to understand the immunologic mechanisms and genetic and microbial risk factors for PFAPA and other tonsil disorders

  • Characterize immune cell populations, gene expression including at the single cell level, epigenetic features, and protein expression ex vivo in blood, tissue, washes, or swabs from people with PFAPA and other tonsil disordersThroughout study

    To collect samples to understand the immunologic mechanisms and genetic and microbial risk factors for PFAPA and other tonsil disorders