Patient-Reported Outcomes in Adults With Congenital Heart Disease

Completed

Conditions studied: Heart Defects, Congenital

In brief

The purpose of this study is to examine the differences in perceived health, psychosocial functioning, behavioral outcomes and quality of life of adults with congenital heart disease who are living in different areas of the world, and how these differences can be understood (e.g., differences in sense of coherence or illness perceptions).

Key facts

Study ID

NCT02150603

Run by

Philip Moons

People needed

4000

Starts

2013-04-01

Expected to finish

2015-02-01

Last updated by the study team

2015-03-12

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 or intra-thoracic great vessels that is actually or potentially of functional significance (including mild, moderate, and severe heart defects)
• 18 years of age or older
• Diagnosed under the age of ten, i.e. before adolescence
• Continuing follow-up at an adult congenital heart disease 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
• Isolated pulmonary hypertension
• Syndromes affecting cognitive abilities

Where it is running

• Stanford Hospital & Clinics — Stanford, California, United States
• Washington University and Barnes Jewish Heart & Vascular Center — St Louis, Missouri, United States
• Children's Hospital & Medical Center — Omaha, Nebraska, United States
• Cincinnati Children's Hospital Medical Center — Cincinnati, Ohio, United States
• Nationwide Children's Hospital — Columbus, Ohio, United States
• Children's Hospital of Pittsburgh of UPMC — Pittsburgh, Pennsylvania, United States
• Hospital de Niños — Córdoba, Argentina
• Private practice — Melbourne, Australia
• University Hospitals Leuven — Leuven, Belgium
• Northern Alberta Adult Congenital Heart Clinic — Edmonton, Canada
• Montreal Heart Institute — Montreal, Canada
• Peter Munk Cardiac Center — Toronto, Canada
• Hôpital Luis Pradel — Lyon, France
• Frontier Lifeline Hospital — Chennai, India
• IRCCS Policlinico San Donato Hospital — Milan, Italy
• Chiba Cardiovascular Center — Chiba, Japan
• Mater Dei Hospital — Msida, Malta
• Amsterdam Medical Center — Amsterdam, Netherlands
• Oslo University Hospital — Oslo, Norway
• Sahlgrenska University Hospital/ Östra — Gothenburg, Sweden
• Karolinska Institute — Stockholm, Sweden
• University Hospital of Umeå — Umeå, Sweden
• University Hospital Bern — Bern, Switzerland
• National Taiwan University Hospital — Taipei, Taiwan

Full record on ClinicalTrials.gov

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