Overview
Idiopathic bronchiectasis is a long-term lung condition where the airways (the tubes that carry air in and out of your lungs) become permanently widened, scarred, and damaged. 'Idiopathic' means that doctors cannot find a clear underlying cause for why this happened. The damaged airways have trouble clearing mucus normally, which leads to mucus building up and creating a breeding ground for repeated lung infections. Over time, this cycle of infection and inflammation causes more damage to the lungs. The most common symptoms include a daily cough that brings up mucus or phlegm, frequent chest infections, shortness of breath, and sometimes coughing up blood. Some people also feel very tired and may lose weight over time. The condition can range from mild — where a person lives a fairly normal life with some daily management — to more severe, where lung function is significantly reduced. There is no cure for idiopathic bronchiectasis, but treatments can help manage symptoms, reduce infections, and slow the progression of lung damage. Treatment usually involves airway clearance techniques, inhaled medications, and antibiotics during flare-ups. With good management, many people with bronchiectasis can maintain a reasonable quality of life.
Key symptoms:
Daily cough that produces mucus or phlegmFrequent chest infections or pneumoniaShortness of breath, especially with activityCoughing up blood (small or large amounts)Wheezing or a rattling sound when breathingChest pain or tightnessFeeling very tired or fatiguedUnintended weight lossClubbing of the fingers (fingertips become rounded and enlarged)Fever and chills during infection flare-upsReduced ability to exercise or be physically active
Clinical phenotype terms (19)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsCHU de Reims — NA
Assiut University — NA
Zhejiang University
Copenhagen University Hospital, Hvidovre — NA
Centre Hospitalier Intercommunal Creteil — PHASE2
National Taiwan University Hospital
Qianfoshan Hospital
Assiut University
University of Calgary
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableAcetylcysteine
adjuvant therapy for patients with abnormal, viscid, or inspissated mucous secretions in bronchiectasis
Rare Disease Specialist
Treatment Centers
8 centersCHU Nantes
📍 Nantes
👤 Sebastien HASCOËT
Stanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🏥 NORDBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
Travel Grants
No travel grants are currently matched to Idiopathic bronchiectasis.
Community
No community posts yet. Be the first to share your experience with Idiopathic bronchiectasis.
Start the conversation →Latest news about Idiopathic bronchiectasis
Disease timeline:
New recruiting trial: Controls for Respiratory Diseases
A new clinical trial is recruiting patients for Idiopathic bronchiectasis
New trial: Comparison of Two Antibiotic Regimens for the Treatment of Early Airways Infection With PA in Adults
Phase PHASE2 trial recruiting. Antibiotic monotherapy treatment and follow-up
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What tests do I need to make sure there is no underlying cause for my bronchiectasis that has been missed?,What airway clearance technique is best for me, and can I be referred to a respiratory physiotherapist?,Should I have antibiotics at home to start early if I get a chest infection, and which antibiotic should I use?,Is long-term antibiotic therapy (like azithromycin) appropriate for me to reduce the number of infections I get?,How often should I have lung function tests and CT scans to monitor my condition?,Are there any clinical trials for bronchiectasis that I might be eligible for?,What vaccinations do I need, and how can I reduce my risk of catching respiratory infections?
Common questions about Idiopathic bronchiectasis
What is Idiopathic bronchiectasis?
Idiopathic bronchiectasis is a long-term lung condition where the airways (the tubes that carry air in and out of your lungs) become permanently widened, scarred, and damaged. 'Idiopathic' means that doctors cannot find a clear underlying cause for why this happened. The damaged airways have trouble clearing mucus normally, which leads to mucus building up and creating a breeding ground for repeated lung infections. Over time, this cycle of infection and inflammation causes more damage to the lungs. The most common symptoms include a daily cough that brings up mucus or phlegm, frequent chest
How is Idiopathic bronchiectasis inherited?
Idiopathic bronchiectasis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Idiopathic bronchiectasis?
Yes — 10 recruiting clinical trials are currently listed for Idiopathic bronchiectasis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Idiopathic bronchiectasis?
11 specialists and care centers treating Idiopathic bronchiectasis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.