Overview
Cryptogenic organizing pneumonia (COP), formerly known as bronchiolitis obliterans organizing pneumonia (BOOP), is a rare lung disease in which the small airways and air sacs (alveoli) become inflamed and plugged with connective tissue. The word "cryptogenic" means the cause is unknown — when organizing pneumonia has a known cause (such as infection, drug reaction, or autoimmune disease), it is simply called "organizing pneumonia" or "secondary organizing pneumonia." COP is not an infection and is not contagious. The disease typically affects adults, usually between the ages of 40 and 60. Common symptoms include a persistent cough, shortness of breath, mild fever, fatigue, and a general feeling of being unwell — much like a flu that does not go away. Many patients are initially misdiagnosed with community-acquired pneumonia because the symptoms and chest X-ray findings look similar. Patients often receive multiple rounds of antibiotics without improvement before the correct diagnosis is made. The good news is that COP usually responds very well to corticosteroid treatment, such as prednisone. Most patients experience significant improvement within days to weeks of starting steroids. However, relapses are common, occurring in roughly 30 to 50 percent of patients when steroids are tapered or stopped. In rare cases, the disease can be severe or progressive, requiring stronger immunosuppressive medications. Overall, the long-term outlook for most patients with COP is favorable with appropriate treatment.
Also known as:
Key symptoms:
Persistent cough that does not respond to antibioticsShortness of breath, especially with activityLow-grade feverFatigue and general feeling of being unwellUnintentional weight lossFlu-like symptoms lasting weeks or monthsCrackling sounds in the lungs heard with a stethoscopeNight sweatsMild chest discomfortReduced ability to exerciseLoss of appetite
Clinical phenotype terms (27)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsUniversity Hospital, Strasbourg, France
Université du Québec a Montréal — NA
Masaryk University
AstraZeneca
Biomedical Advanced Research and Development Authority
University Hospital, Strasbourg, France
Acrotech Biopharma Inc. — PHASE3
University of Zurich
Columbia University — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Cryptogenic organizing pneumonia.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 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
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Cryptogenic organizing pneumonia.
Community
No community posts yet. Be the first to share your experience with Cryptogenic organizing pneumonia.
Start the conversation →Latest news about Cryptogenic organizing pneumonia
Disease timeline:
New recruiting trial: Zanubrutinib Combined With G-CVP in Previously Untreated FL
A new clinical trial is recruiting patients for Cryptogenic organizing pneumonia
New recruiting trial: Police Officers' Mental Health and Occupational Health Monitoring
A new clinical trial is recruiting patients for Cryptogenic organizing pneumonia
New recruiting trial: Interventional Study to Evaluate the Combination of Palbociclib + Sunitinib as a Treatment for Advanced Solid Tumors
A new clinical trial is recruiting patients for Cryptogenic organizing pneumonia
New recruiting trial: Obstacles and Facilitators to the Treatment of Police Officers With Mental Health Disorders
A new clinical trial is recruiting patients for Cryptogenic organizing pneumonia
New recruiting trial: Evaluation of Catching Skills in Preschoolers With Motor Difficulties
A new clinical trial is recruiting patients for Cryptogenic organizing pneumonia
New recruiting trial: Cognitive-psychophysiological Treatment for Tics in Young People With Tourette's Syndrome With or Without Biofeedback
A new clinical trial is recruiting patients for Cryptogenic organizing pneumonia
New recruiting trial: tAN for First Responders
A new clinical trial is recruiting patients for Cryptogenic organizing pneumonia
New recruiting trial: To Evaluate Efficacy of Belinostat or Pralatrexate in Combination Against CHOP Alone in PTCL
A new clinical trial is recruiting patients for Cryptogenic organizing pneumonia
New recruiting trial: Caries-Obesity Prevention in Children by Modifying Risk Behaviors Among Parents With Immigrant Background-COP Study
A new clinical trial is recruiting patients for Cryptogenic organizing pneumonia
New recruiting trial: A Prospective Study of Low-dose Decitabine Combined With COP Regimen in the Treatment of Relapsed and Refractory DLBCL
A new clinical trial is recruiting patients for Cryptogenic organizing pneumonia
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.How certain are you that my organizing pneumonia is cryptogenic and not caused by something else?,How long will I need to take steroids, and what side effects should I watch for?,What is my risk of relapse, and what should I do if my symptoms come back?,Are there steroid-sparing medications that might work for me?,How often will I need follow-up CT scans and lung function tests?,Should I make any changes to my diet, exercise, or daily routine during treatment?,Are there any clinical trials or newer treatments I should know about?
Common questions about Cryptogenic organizing pneumonia
What is Cryptogenic organizing pneumonia?
Cryptogenic organizing pneumonia (COP), formerly known as bronchiolitis obliterans organizing pneumonia (BOOP), is a rare lung disease in which the small airways and air sacs (alveoli) become inflamed and plugged with connective tissue. The word "cryptogenic" means the cause is unknown — when organizing pneumonia has a known cause (such as infection, drug reaction, or autoimmune disease), it is simply called "organizing pneumonia" or "secondary organizing pneumonia." COP is not an infection and is not contagious. The disease typically affects adults, usually between the ages of 40 and 60. Com
How is Cryptogenic organizing pneumonia inherited?
Cryptogenic organizing pneumonia follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Cryptogenic organizing pneumonia typically begin?
Typical onset of Cryptogenic organizing pneumonia is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Cryptogenic organizing pneumonia?
Yes — 1 recruiting clinical trial is currently listed for Cryptogenic organizing pneumonia on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Cryptogenic organizing pneumonia?
11 specialists and care centers treating Cryptogenic organizing pneumonia are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.