Nasal nitric oxide testing for better care in primary ciliary dyskinesia

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to enhance the understanding of primary ciliary dyskinesia (PCD) by measuring nitric oxide levels in the nasal passages and correlating these results with existing diagnostic tests. Participants referred for nasal nitric oxide testing will undergo the procedure after providing informed consent. The study will collect data from electronic medical records to refine diagnostic testing for PCD at Arkansas Children's Hospital, involving collaboration with various medical specialties. The ultimate goal is to improve the accuracy of PCD diagnosis and potentially lead to the approval of nasal nitric oxide testing as a diagnostic tool.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Individuals who are diagnosed with Primary Ciliary Dyskinesia OR
* Individuals with abnormal PCD diagnostics (abnormal ciliary biopsy or PCD genetics) OR
* Individuals with unexplained bronchiectasis OR
* Individuals undergoing PCD diagnostic testing (ciliary biopsy, PCD genetic testing) or concern based on clinical symptoms (at least two of the following):

  * Neonatal respiratory distress
  * Organ laterality defects
  * Year-round cough starting in first year of life or bronchiectasis on chest CT
  * Year-round nasal congestion starting in first year of life or pansinusitis
  * Multiple ear infections in the first two years of life with sequelae (e.g. ear tubes, chronic effusion, abnormal audiological exam)
  * History of recurrent pneumonias (at least 2 in one year or more than 3 at any time)
* Ability to provide consent for participation in study by the participants or guardian
* Ability to perform the test
* Age \>= 2 years of age

Exclusion Criteria:

* Individuals who are unable to understand the requirements of the study.
* Individuals (or guardians) who are unwilling to provide consent.
* Individuals who are unable to complete the testing
* Recent history of sinus surgery (within four weeks) or bloody nose (within one week) of testing (they can be included at a later date)
* Patients who are currently being treated (within one week) with antibiotics for sinusitis or respiratory symptoms (they can be included at a later date)
* Age \<2 years of age

Where it's running

• Arkansas Children's Hospital
  Little Rock, Arkansas, United States Recruiting

Study contacts

• Study coordinator: Zena Ghazala, MD
• Email: zbghazala@uams.edu
• Phone: 5013641006

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Bronchial hyperresponsiveness in children with primary ciliary dyskinesia

  This will see if children with primary ciliary dyskinesia have sensitive airways (bronchial hyperresponsiveness) by using a methacholine breathing challenge and related tests.

  Recruiting Indiana University · Indianapolis, Indiana · NCT07288827

• PALMIRE cohort: phenotyping inflammatory lung diseases to enable personalized care

  This project will collect clinical, imaging, and biological data from adults with asthma, COPD, bronchiectasis, cystic fibrosis, primary ciliary dyskinesia, or interstitial lung disease to try to identify disease subtypes and markers that could guide more personalized care.

  Recruiting CHU de Reims · Reims · NCT07274631

• Thermal spa treatment to improve symptoms of primary ciliary dyskinesia

  We will try a 3-week thermal spa treatment in adults with primary ciliary dyskinesia to see if it improves ear, nose, and throat symptoms, lowers infection and antibiotic rates, and helps hearing and lung function.

  Recruiting Association Francaise pour la Recherche Thermale · Nice · NCT07029594

• Glycine and magnesium plus thiamine for primary ciliary dyskinesia

  This trial will test whether daily oral glycine and magnesium with thiamine, alone or combined, can help people aged 5 and older with primary ciliary dyskinesia clear mucus and breathe better.

  Recruiting Instituto Nacional de Enfermedades Respiratorias · Mexico City · NCT06959251

• Observational study on Primary Ciliary Dyskinesia

  This study looks at people with Primary Ciliary Dyskinesia to see what factors might affect how severe their condition is and to help improve their care.

  Recruiting at 18 sites Institut National de la Santé Et de la Recherche Médicale, France · Besançon and 31 other locations · NCT05951478

• Using nasal nitric oxide testing to improve diagnosis of primary ciliary dyskinesia

  This study is testing if a simple nasal test can help doctors diagnose primary ciliary dyskinesia in people aged 2 and older who show symptoms of the condition.

  Recruiting Connecticut Children's Medical Center · Hartford, Connecticut · NCT05889013

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.