P083 Coproducing cystic fibrosis care: a Registry-enabled learning health system
نویسندگان
چکیده
منابع مشابه
Cystic Fibrosis Foundation and European Cystic Fibrosis Society Survey of cystic fibrosis mental health care delivery.
BACKGROUND Psychological morbidity in individuals with cystic fibrosis (CF) and their caregivers is common. The Cystic Fibrosis Foundation (CFF) and European Cystic Fibrosis Society (ECFS) Guidelines Committee on Mental Health sought the views of CF health care professionals concerning mental health care delivery. METHODS An online survey which focused on the current provision and barriers to...
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Cystic fibrosis (CF) is an inherited disease that primarily affects the lungs and the digestive system, however, it also affects a number of other organs and systems. More than 90% of mortality of CF patients is due to lung complications. Healthy lungs are important for a long life for people with CF, We will discuss two important topics for maintaining respiratory health. Chronic use of drug...
متن کاملCystic fibrosis mortality: registry data of cystic fibrosis.
BACKGROUND The Cystic Fibrosis Foundation has been collecting mortality and other data on cystic fibrosis patients from over 100 U.S. clinical centers since 1966, and publishes annual reports of the data. Cystic fibrosis is an important autosomal recessive genetic disease, affecting multiple body systems, with disability and early mortality as very common complications. RESULTS Observed data ...
متن کاملFemale sexual health care in cystic fibrosis.
Fifty five teenage girls with cystic fibrosis and their mothers were interviewed to assess the provision of sexual health information. Parents were the most common source of information for adolescents. The cystic fibrosis doctor was identified as the key resource for parents. Yet few parents had spoken to their doctor about these issues, and 96% requested more information. This information was...
متن کاملAllergic bronchopulmonary aspergillosis in cystic fibrosis. A European epidemiological study. Epidemiologic Registry of Cystic Fibrosis.
Allergic bronchopulmonary aspergillosis (ABPA) is a disease resulting from a hypersensitivity response to Aspergillus fumigatus, although the pathogenesis of the disease is unknown and its prevalence in cystic fibrosis (CF) is still poorly defined. Data from the Epidemiologic Registry of Cystic Fibrosis (ERCF) on 12,447 CF patients gathered from 224 CF centres in nine European countries were an...
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ژورنال
عنوان ژورنال: Journal of Cystic Fibrosis
سال: 2019
ISSN: 1569-1993
DOI: 10.1016/s1569-1993(19)30377-7