Trial Now Recruiting: A National Registry For Pulmonary Alveolar Proteinosis (NCT02461615)
WHY IT MATTERS
This is an active recruitment opportunity for PAP patients to directly influence research priorities and gain access to new diagnostic tests and experimental therapies being evaluated through the registry.
Doctors are building a national database to collect information from 500 patients with pulmonary alveolar proteinosis (PAP), a rare lung disease. This registry will help researchers better understand PAP, improve how doctors diagnose it, and test new treatments. Patients who join will have a voice in deciding what research gets done.
NCT ID: NCT02461615 Status: RECRUITING Conditions: Pulmonary Alveolar Proteinosis Enrollment: 500 Sponsor: Children's Hospital Medical Center, Cincinnati Summary: 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 re
YOU CAN ACT ON THIS
If you have PAP or a family member does, contact Children's Hospital Medical Center in Cincinnati now to ask about enrollment eligibility and the registration process for NCT02461615.