Clinical trials: Immotile Cilia Syndrome
Primary Ciliary Dyskinesia
In Vivo Measurements of Nasal Ciliary Beat Frequency by Using Interferometry
1. Assessment of a high speed video camera with a green light source for the measurement of ciliary beat frequency (CBF) in the nasal airways of patients. 2.
- Trial name
- NCT02699177
- Testing
- CBF measurements
- Where
- Israel
- Volunteers
- 300 people
- Sponsor
- Hadassah Medical Organization
Primary Ciliary Dyskinesia
Utility of PCD Diagnostics to Improve Clinical Care
This is a study evaluating the utility of current Primary Ciliary Dyskinesia (PCD) diagnostic tests, including nasal nitric oxide testing.
- Trial name
- NCT03704207
- Testing
- nNO testing
- Where
- United States
- Volunteers
- 200 people
- Sponsor
- Vanderbilt University Medical Center
Kartagener Syndrome
Long-term Lung Function and Disease Progression in Children With Early Onset Primary Ciliary Dyskinesia Lung Disease
Primary ciliary dyskinesia (PCD), also known as Kartagener syndrome, is a genetic disorder of the cilia, which are microscopic hair-like cells.
- Trial name
- NCT00722878
- Where
- 6 sites in United States, Canada
- Volunteers
- 48 people
- Sponsor
- University of North Carolina, Chapel Hill
Primary Ciliary Dyskinesia, Primary Immune Deficiency
Defining the Genetic Etiology of Suppurative Lung Disease in Children and Adults
The investigators will utilize a systematic approach for the diagnostic evaluation of patients to identify characteristics which may distinguish between Primary Immunodeficiency (PID) disorders versus Primary Ciliary Dyskinesia…
- Conditions
- Primary Ciliary Dyskinesia, Primary Immune Deficiency, Kartagener Syndrome
- Trial name
- NCT04702243
- Testing
- Genetic Testing for PCD or PID, Unaffected Family Member Genetic Testing
- Where
- 8 sites in United States, Canada
- Volunteers
- 436 people
- Sponsor
- University of North Carolina, Chapel Hill
Primary Ciliary Dyskinesia (PCD), Fertility
Developing Resource Interventions for Healthcare Professionals and Patients to Improve Knowledge About Fertility in Primary Ciliary Dyskinesia
This project will involve working with people with PCD and medical professionals to develop resources that will help patients and the people providing their care to better understand fertility and pregnancy safety in people with…
- Conditions
- Primary Ciliary Dyskinesia (PCD), Fertility, Pregnancy, Health Information Exchange
- Trial name
- REPRoDUCE (NCT07531277)
- Testing
- Online educational resource, Toolkit for healthcare professionals
- Volunteers
- 30 people
- Sponsor
- University of Southampton
Normal Values of Nasal Nitric Oxide in Healthy Adults
Determination of Normal Values of Nasal Nitric Oxide in Adults
Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterized by impaired airway mucociliary clearance leading to recurrent respiratory infections, bronchiectasis and eventually respiratory insufficiency.
- Trial name
- NCT02133547
- Where
- Switzerland
- Volunteers
- 200 people, healthy volunteers welcome
- Sponsor
- Centre Hospitalier Universitaire Vaudois
Cystic Fibrosis, Pseudohypoaldosteronism
Genetic Disorders of Mucociliary Clearance in Nontuberculous Mycobacterial Lung Disease
Healthy volunteers and patients with diseases that involve problems clearing mucus from the lungs will be examined and tested to better understand the reasons for recurring lung infections in these patients and to try to develop…
- Conditions
- Cystic Fibrosis, Pseudohypoaldosteronism, Nontuberculous Mycobacterial Infection, Chronic Granulomatous Disease
- Trial name
- NCT00368446
- Where
- United States
- Volunteers
- 87 people
- Sponsor
- National Heart, Lung, and Blood Institute (NHLBI)
Primary Ciliary Dyskinesia, Kartagener Syndrome
The Ear-Nose-Throat (ENT) Prospective International Cohort of PCD Patients (EPIC-PCD)
The Ear-Nose-Throat (ENT) Prospective International Cohort of patients with Primary Ciliary Dyskinesia (EPIC-PCD) is a prospective observational clinical cohort study, set up as a multinational multi-centre study.
- Trial name
- EPIC-PCD (NCT04611516)
- Where
- Switzerland
- Volunteers
- 1,000 people
- Sponsor
- University of Bern
Primary Ciliary Dyskinesia
Registry for Primary Ciliary Dyskinesia
Primary Ciliary Dyskinesia (PCD) is a rare disease, which means that any single PCD center has experience with a limited number of patients.
- Trial name
- NCT03271840
- Where
- Canada
- Volunteers
- 12 people
- Sponsor
- University of Alberta
Primary Ciliary Dyskinesia
Glycine and Magnesium+Thiamine for the Treatment of Primary Ciliary Dyskinesia
Patients with primary ciliary dyskinesia (PCD) have trouble with clearing their bronchi from mucus, which in the long-term may produce severe damage to the lungs.
- Trial name
- NCT06959251
- Testing
- Glycine, Magnesium+thiamine
- Where
- Mexico
- Volunteers
- 60 people
- Sponsor
- Instituto Nacional de Enfermedades Respiratorias
Primary Ciliary Dyskinesia, Kartagener Syndrome
Physical Fitness, Exercise Capacity and Activities of Daily Living in Primary Ciliary Dyskinesia: a Retrospective Study
Decreased pulmonary function, peripheral muscle strength, and exercise capacity were reported in primary ciliary dyskinesia (PCD) in recent studies.
- Conditions
- Primary Ciliary Dyskinesia, Kartagener Syndrome, Immotile Cilia Syndrome
- Trial name
- NCT05040607
- Testing
- Data Collection
- Where
- Turkey (Türkiye)
- Volunteers
- 48 people, healthy volunteers welcome
- Sponsor
- Hacettepe University
Cystic Fibrosis (CF), Primary Ciliary Dyskinesia (PCD)
Upper Extremity Exercise Capacity, Muscle Oxygenation, and Balance in Pediatric CF and PCD
The number of studies evaluating respiratory functions and upper extremity functional exercise capacity in patients with CF and PCD is limited in the literature.
- Trial name
- NCT07148362
- Where
- Turkey (Türkiye)
- Volunteers
- 88 people, healthy volunteers welcome
- Sponsor
- Gazi University
Primary Ciliary Dyskinesia
Thermal Spa Treatment and Improvement of Primary Ciliary Dyskinesia
The goal of this clinical trial is to evaluate whether a 3-week thermal spa treatment can improve quality of life and reduce ENT (ear, nose, and throat) symptoms in adults with Primary Ciliary Dyskinesia (PCD).
- Trial name
- CANDY (NCT07029594)
- Testing
- balneotherapy
- Where
- France
- Volunteers
- 35 people
- Sponsor
- Association Francaise pour la Recherche Thermale
Primary Ciliary Dyskinesia
A Study Providing Genetic Testing to Find Those Who May Have Primary Ciliary Dyskinesia for Potential Clinical Trials
Primary purpose is to identify individuals who have PCD due to a genetic mutation within the DNAI1 and other genes of interest to help refer participants to future clinical studies for this rare disease.
- Trial name
- NCT06172374
- Testing
- Sano Genetics Testing Kit
- Where
- United States
- Volunteers
- 150 people
- Sponsor
- ReCode Therapeutics
Primary Ciliary Dyskinesia
Living With Primary Ciliary Dyskinesia (Living With PCD)
Living with PCD (formerly COVID-PCD) is a participatory research project that aims to answer emerging questions about primary ciliary dyskinesia (PCD) in order to improve the health and quality of life of people with PCD.
- Trial name
- NCT04602481
- Where
- Switzerland
- Volunteers
- 1,500 people
- Sponsor
- University of Bern
Primary Ciliary Dyskinesia (PCD)
Comparison of Individuals With Primary Ciliary Dyskinesia and Healthy Controls
To date, the literature has not yet elucidated the status of malnutrition and sarcopenia in children and adolescents with PCD compared to healthy controls.
- Trial name
- NCT07740551
- Testing
- Physical Evaluations in Children with Primary Ciliary Dyskinesia, Physical Evaluations in Healthy Children
- Where
- Turkey (Türkiye)
- Volunteers
- 30 people, healthy volunteers welcome
- Sponsor
- Izmir Democracy University
Cystic Fibrosis (CF), Primary Ciliary Dyskinesia (PCD)
Exercise Capacity, Muscle Oxygenation, Respiratory Muscle Strength, and Physical Activity Level in Pediatric CF and PCD
Cystic fibrosis (CF) and primary ciliary dyskinesia (PCD) are genetic diseases characterized by chronic respiratory tract infections.
- Trial name
- NCT07157644
- Where
- Turkey (Türkiye)
- Volunteers
- 88 people, healthy volunteers welcome
- Sponsor
- Gazi University
Ciliary Motility Disorders, Primary Ciliary Dyskinesia
Genotype/Phenotype Correlation With Focus on Lung Function in Primary Ciliary Dyskinesia (PCD)
Primary Ciliary Dyskinesia (PCD) is a rare genetic disorder characterized by dysfunction of motile cilia associated with recurrent infections of the airways, laterality defects (Situs inversus totalis in about 50% of cases) and…
- Trial name
- LuFu_PCD (NCT04717115)
- Testing
- Genetic diagnosis
- Where
- Germany
- Volunteers
- 1,500 people
- Sponsor
- University Hospital Muenster
Primary Ciliary Dyskinesia
Otolith Function in Patients With Primary Ciliary Dyskinesia
The purpose of this study is to determine whether patients with primary ciliary dyskinesia (PCD) have reduced or absent otolith function.The otolith system is a specific part of the inner ear vestibular (balance) system that…
- Trial name
- NCT01246258
- Testing
- Vestibular evoked myogenic potentials (VEMPs), Utricular centrifugation test
- Where
- United Kingdom
- Volunteers
- 5 people
- Sponsor
- Imperial College Healthcare NHS Trust
Primary Ciliary Dyskinesia
The Effect of a Dietary Supplement Rich in Nitric Oxide in Patients Diagnosed With Primary Ciliary Dyskinesia.
The purpose of this study is to determine the effect of a dietary supplement rich in nitric oxide (NO) on nasal nitric oxide and fractional exhaled nitric oxide (FeNO),on ciliary beat frequency assessed by high-speed digital…
- Trial name
- NCT04489472
- Testing
- Beet-it Juice
- Where
- United States
- Volunteers
- 20 people
- Sponsor
- The University of Texas Health Science Center, Houston