Researchers are looking for current and former smokers with or without COPD to enroll in a registry to be contacted for future studies.
Gather detailed information on the health and treatment of patients with severe asthma worldwide, track how well patients are responding to treatment, and undertake medical research using data from the registry to improve asthma treatment and care.
We are performing a clinical study to determine the optimal frequency for medications for infected pleural fluid, referred to as intrapleural enzyme therapy (IET). Participants will either receive once daily IET or twice daily IET. We hypothesize that once daily IET will be non-inferior to twice daily IET.
Evaluate the differences between two different treatment durations for exacerbations in a pediatric sample to determine which should be clinical standard.
Evaluate the regional lung function and structural changes using MRI in children with cystic fibrosis (CF) prescribed either immediate or tailored therapy for their pulmonary exacerbation. The primary outcome measure for this ancillary study is the change in ventilation defect percentage (VDP) calculated from Xe MRI, which represents the fraction of the lung with absent or reduced ventilation.
There is a movement toward addressing social risk factors as part of healthcare delivery, with similar efforts launched by the CF Foundation. However, current social screening tools do not capture the unique risks and needs of people with CF, have not been tailored to adults with CF vs caregivers of children with CF, and have not been adapted to multidisciplinary CF care delivery. Our work also showed <20% of those who report needs access help, and found barriers related to stigma, guilt, or fear. It is critical to develop a social screening instrument that is specific to adults and caregivers of children with CF, acceptable to them, and rigorously tested for reliability and validity. Using a community-engaged process, we will systematically address these knowledge gaps.
The PH-ILD Registry is a prospective registry aiming to characterize and capture real world data from patients with PH-ILD, for which limited data exists for this population. Data collected includes demographic characteristics, treatment patterns, and clinical outcomes to further clinical understanding of the disease as it develops over a patient's lifetime.
We are looking for links between cystic fibrosis outcomes and a history of intimate partner violence.
The purpose of this study is to evaluate a new test being developed by Tempus for patients with Non-Small Cell Lung Cancer (NSCLC). The goal of this new test is to predict the likelihood of a patient's cancer coming back after treatment, and to further explore changes in patient's tumors throughout treatment to see how they respond.
This study hopes to identify barriers to care for patients with interstitial lung disease by surveying patient experiences with symptoms, diagnosis, ongoing treatment of their lung disease.