WebNon-identifiable Registry data is used to improve the health of people with cystic fibrosis through research, to guide quality improvement at care centres and to monitor the safety of new drugs. A strict evaluation process, overseen by a committee of experts, ensures that Registry data is used in line with the consent that has been provided ... WebAug 6, 2008 · Cystic fibrosis foundation registry: 1996 annual data report. Cystic Fibrosis Foundation, Bethesda, MD. 5. Cystic Fibrosis Trust Clinical Standards and Accreditation Group. 2001. Standards for the clinical care of children and adults with cystic fibrosis in the UK.
Data Use Manual for CFFPR Data - cff.org
WebSep 20, 2024 · In the United States, the median FEV1for children in 2024 was 94.3%, with only a very small minority in the severe lung disease category (< 40% predicted FEV1); … WebNov 16, 2024 · Objectives: To determine if missed care in the US Cystic Fibrosis Foundation Patient Registry (CFFPR) is associated with decreased lung function at follow-up visits. Methods: De-identified US Cystic Fibrosis Foundation Patient Registry (CFFPR) data for 2004-2016 was analyzed, with the exposure of interest being ≥ 12-month gap in … joe walsh - rocky mountain way
American Journal of Respiratory and Critical Care Medicine
WebApr 12, 2024 · Methods. The model projects the impact of ivacaftor vs. standard care in people with CF aged ≥6 years with CFTR gating mutations by combining parametric equations fitted to historical registry survival data, with mortality hazards adjusted for fixed and time-varying person-level characteristics. Disease progression with standard care … WebComplete capture longitudinal data CFF registry captures longitudinal data at set intervals Patient reported outcomes (PROs) • PROs routinely captured in RIGOR, ASPS TOPS, … WebCystic Fibrosis Foundation Patient Registry Annual Data Report 2012 . To check for more recent reports click here to go to website . Reports for earlier years: Cystic … joe walsh rivers of the hidden funk