Actively Recruiting
A National Registry For Pulmonary Alveolar Proteinosis
Led by Children's Hospital Medical Center, Cincinnati · Updated on 2026-03-17
500
Participants Needed
1
Research Sites
817 weeks
Total Duration
On this page
Sponsors
C
Children's Hospital Medical Center, Cincinnati
Lead Sponsor
R
Rare Diseases Clinical Research Network
Collaborating Sponsor
AI-Summary
What this Trial Is About
The major goal of Part A of this study is to establish a National PAP Registry to help make reliable new research tests available to doctors to improve the diagnosis of PAP, increase awareness and knowledge of PAP, and give patients a 'seat at the table' in planning and conducting PAP research including the clinical testing of several new potential therapies. The major goal of Part B of this study is to define the natural history of autoimmune PAP (aPAP), develop a disease severity score that reflects how aPAP patients feel and function, and to develop and test novel tools to measure the severity of aPAP lung disease. Funding Source - FDA OOPD
CONDITIONS
Official Title
A National Registry For Pulmonary Alveolar Proteinosis
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Written informed consent and assent, if applicable
- History of chest computed tomography or chest X-ray findings compatible with PAP
- Diagnosis of PAP by at least one of the following: positive serum GM-CSF autoantibody test, lung biopsy showing PAP, bronchoalveolar lavage cytology compatible with PAP, or known genetic mutations causing PAP
- For Part B, diagnosis of autoimmune PAP confirmed by positive serum GM-CSF autoantibody test and compatible chest imaging or biopsy
You will not qualify if you...
- Serious medical illness likely to interfere with study completion, as judged by the investigator
- For Part A, absence of a PAP diagnosis
- For Part B, absence of autoimmune PAP diagnosis
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States, 45229
Actively Recruiting
Research Team
B
Brenna C Carey, Ms, PhD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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