Eisenmenger Syndrome in the Nordic Countries

NCT ID: NCT01976533

Last Updated: 2015-12-24

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

UNKNOWN

Total Enrollment

714 participants

Study Classification

OBSERVATIONAL

Study Start Date

2012-10-31

Study Completion Date

2016-10-31

Brief Summary

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This is a historical cohort study with retrospective collection of data comprising all Nordic patient's diagnosed with Eisenmengers syndrome in the period 1977 through 2011. The goal is to determine prognostic factors for mortality and morbidity.

Detailed Description

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The following variables are obtained from national registries for each individual fulfilling the inclusion criteria:

* Personal data: Gender, day of birth, vital status (dead/alive), date of death, cause of death, all cause hospitalization days
* Specific cardiac malformation diagnosis
* Heart-lung transplantation.
* Social data: Highest educational level, marital status, employment status (Denmark only)

Primary endpoints

* Incidence and prevalence of Eisenmenger Syndrome
* All-cause mortality
* All-cause morbidity (hospitalization for any cause)
* Heart-lung transplantation
* Advanced treatment
* Mortality with AT
* Highest educational level
* Personal income
* Marital status
* Job status

Conditions

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Eisenmenger Syndrome

Study Design

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Observational Model Type

COHORT

Study Time Perspective

RETROSPECTIVE

Study Groups

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Advanced therapy, Heart-lung transplantation, dead

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Eisenmenger syndrome

Exclusion Criteria

\-
Maximum Eligible Age

100 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Lund University Hospital

OTHER

Sponsor Role collaborator

Rikshospitalet University Hospital

OTHER

Sponsor Role collaborator

Hospital for Children and Adolescents, Finland

OTHER

Sponsor Role collaborator

Actelion

INDUSTRY

Sponsor Role collaborator

Rigshospitalet, Denmark

OTHER

Sponsor Role lead

Responsible Party

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Cristel Sørensen

MD

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Lars Soendergaard, MD, DMSc

Role: PRINCIPAL_INVESTIGATOR

Rigshospitalet, Denmark

Locations

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Dept. Cardiology B, Rigshospitalet

Copenhagen, , Denmark

Site Status

Centers for Adult Congenital Heart Disease

Various, , Finland

Site Status

Centers for Adult Congenital Heart Disease

Various, , Norway

Site Status

Centers for adult congenital heart disease

Various, , Sweden

Site Status

Countries

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Denmark Finland Norway Sweden

Other Identifiers

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3-3013-144/1/

Identifier Type: -

Identifier Source: org_study_id