To 1) measure and improve the quality of care, 2) determine the clinical effectiveness, comparative effectiveness, and cost effectiveness of treatment approaches, 3) understand risk factors for outcomes , and 4) facilitate funded clinical trials of new therapies and collaboration within the pulmonary arterial hypertension (PAH) community.
This study will test how effectively changes in lung structure and function can be detected with a new inhaled gas combined with a MRI.
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.
To collect research samples from CF patients already having a clinically indicated colonoscopy. We're collecting a few additional samples on top of what is collected for clinical purposes to give to researchers for future projects. This will increase your time of procedure around 5 minutes.
The virus that causes COVID-19 disease infects many people, but only some get sick. We want to understand how COVID affects the immune system and what makes severe COVID infections different from other diseases that cause hospitalization and breathing problems. We collect samples of blood, sputum, urine, and stool from patients in the hospital to learn how COVID affects cells and molecules of the immune system.
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.
The primary objective of PATIENCE is to develop a standardized approach to the treatment of NTM in CF patients with a diagnosis of NTM disease. The secondary objectives are to: - Evaluate the feasibility and tolerability of a standardized treatment protocol for NTM disease - Evaluate effectiveness of a standardized NTM disease treatment protocol to serve as baseline/reference estimates of endpoints in clinical care and future therapeutic trials - Support biomarker development for markers of NTM treatment response through banking of clinical specimens and NTM isolates linked with outcomes data - Characterize clinical features of patients achieving treatment success compared to those unresponsive to treatment
To follow people with cystic fibrosis who have cultured a positive NTM bacteria.
This is an exploratory study in cancer biomarker research, hoping to identify cell-signaling using DNA, in patients with SCLC.
Patients will undergo a blood draw for a gene classifier test. Some patients will have their physicians informed of the result, and another group of patients will be randomized to be managed by standard of care. Qualifying patients have incidentally identified lung nodules assessed as < 50% risk of cancer.