Assessment of Patterns of Patient Reported Outcomes in Adults With Congenital Heart Disease - International Study II
Completed
Conditions studied: Congenital Heart Disease
In brief
This is an international, cross-sectional and descriptive study that aims to investigate differences in patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) and that aims to explore the profile and healthcare needs of adults with congenital heart diseases.
Key facts
- Study ID
- NCT04902768
- Run by
- KU Leuven
- People needed
- 8415
- Starts
- 2019-08-01
- Expected to finish
- 2022-12-31
- Last updated by the study team
- 2024-05-16
Who can join
Age: 18 and older. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Diagnosed with congenital heart disease, defined as: "a gross structural abnormality of the heart and/or intra-thoracic great vessels that is actually or potentially of functional significance (including mild, moderate, and complex heart defects)"
- Aged 18 years of age or older at the moment of study inclusion
- Diagnosed with congenital heart disease before the age of 10 years
- Follow-up at an ACHD center or included in a national/regional registry
- Physical, cognitive, and language abilities to complete self-report questionnaires
You may not qualify if…
- Prior heart transplantation
Where it is running
- Lucile Packard Children's Hospital and Stanford Health Care — Stanford, California, United States
- University of Florida Health — Gainesville, Florida, United States
- Taussig Heart Center of Johns Hopkins Hospital — Baltimore, Maryland, United States
- Boston Children's / Brigham and Women's — Boston, Massachusetts, United States
- Mount Sinai Heart — New York, New York, United States
- Nationwide Children's Hospital — Columbus, Ohio, United States
- Oregon Health and Science University — Portland, Oregon, United States
- Philadelphia Penn Medicine — Philadelphia, Pennsylvania, United States
- University of Southwestern Medical Center — Dallas, Texas, United States
- Hospital San Juan De Dios De La Plata — Buenos Aires, Argentina
- Hospital de Niños — Córdoba, Argentina
- Melbourne Children's Cardiology — Melbourne, Australia
- Vienna General Hospital — Vienna, Austria
- Ghent University Hospital — Ghent, Belgium
- University Hospitals Leuven — Leuven, Belgium
- Princess Marina Hospital — Gaborone, Botswana
- Hospital das Clinicas da Faculdade de Medicina de Ribeirão Preto — Ribeirão Preto, Brazil
- National Heart Hospital — Sofia, Bulgaria
- Clinique Medical Le Jourdain — Yaoundé, Cameroon
- Mazankowski Alberta Heart Institute — Edmonton, Canada
- Montreal Heart Institute, Université de Montréal — Montreal, Canada
- Intituto Nacional Del Torax — Santiago, Chile
- Meintegral Clinic — Manizales, Colombia
- Copenhagen University Hospital — Copenhagen, Denmark
- University of California — San Francisco, California, United States
Full record on ClinicalTrials.gov
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