A National Registry For Pulmonary Alveolar Proteinosis

Part of paid clinical trials in Cincinnati, Ohio.

Sponsor
Children's Hospital Medical Center, Cincinnati
Study ID
NCT02461615
Status
Recruiting

Conditions

  • Pulmonary Alveolar Proteinosis

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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

Key Dates

First listed
Jun 3, 2015
Start date
Apr 30, 2015
Status verified
Mar 2026
Primary completion
Dec 31, 2030
Completion
Dec 31, 2030

Study Design

Enrollment
500 participants (estimated)

Arms

  • Arm: Registry Participants
    All participants who participate in the National PAP Registry will be put into this cohort and observed over approximately 5 years.

Primary Outcome Measure

DBS card GM-CSF autoantibody levels to diagnose Autoimmune PAP [ Time Frame: 5 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Cincinnati Children's Hospital Medical CenterCincinnatiOhio45229
Brenna C Carey, MS, PhD
513-636-8916

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