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The Fontan outcomes network: first steps towards building a lifespan registry for individuals with Fontan circulation in the United States
- Source :
- Cardiology in the Young. 30:1070-1075
- Publication Year :
- 2020
- Publisher :
- Cambridge University Press (CUP), 2020.
-
Abstract
- The Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.
- Subjects :
- Adult
Heart Defects, Congenital
Gerontology
2019-20 coronavirus outbreak
media_common.quotation_subject
Longevity
MEDLINE
030204 cardiovascular system & hematology
Fontan Procedure
Fontan circulation
03 medical and health sciences
0302 clinical medicine
Quality of life (healthcare)
Humans
Medicine
Registries
030212 general & internal medicine
Child
media_common
Emotional health
Data collection
business.industry
Physical health
General Medicine
United States
Pediatrics, Perinatology and Child Health
Quality of Life
Psychological resilience
Cardiology and Cardiovascular Medicine
business
Subjects
Details
- ISSN :
- 14671107 and 10479511
- Volume :
- 30
- Database :
- OpenAIRE
- Journal :
- Cardiology in the Young
- Accession number :
- edsair.doi.dedup.....e82f35887e153255b76baf8fcd7eb8bd