Status:

UNKNOWN

Congenital Heart Initiative-Redefining Outcomes and Navigation to Adult Centered Care

Lead Sponsor:

Children's National Research Institute

Collaborating Sponsors:

Patient-Centered Outcomes Research Institute

Louisiana Public Health Institute

Conditions:

Congenital Heart Disease

Comorbidities and Coexisting Conditions

Eligibility:

All Genders

18+ years

Brief Summary

Congenital heart defects (CHDs) are a heterogeneous group of rare diseases of varying severity, each diagnosis with its unique set of co-morbidities. In addition to the heterogeneity, perhaps the grea...

Detailed Description

ACHD Surveillance Program/Observational Cohort (Aim 1 and Aim 2): To investigate the first two aims of this proposal, the study investigators will design and analyze an observational cohort of subject...

Eligibility Criteria

Inclusion

  • For Aims 1 \& 2, participants will be deemed eligible to participate if they meet the following criteria:
  • Age greater than or equal to 18 years at the time of initial data query
  • Diagnosis of Congenital Heart Disease with at least one inpatient, outpatient, or emergency room visit within 8 years prior to the time of the initial data query
  • Retrospective data available for 1-3 years prior to initial data query
  • For Aim 3, participants will be deemed eligible to participate if they meet the following criteria:
  • Age greater than or equal to18 years at the time of initial data query
  • Diagnosis of Congenital Heart Disease with at least one inpatient, outpatient, or emergency room visit within 6 years prior to the time of the initial data query
  • Contact Information (email, address, and/or phone number)
  • Email access through internet connected device or smartphone (Android or iOS)
  • Can read/write English well enough to fill out on-line surveys

Exclusion

  • Age \< 18 years
  • No Congenital Heart Disease (as classified by ICD9/10 codes)

Key Trial Info

Start Date :

April 1 2022

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

June 30 2024

Estimated Enrollment :

3000 Patients enrolled

Trial Details

Trial ID

NCT05185232

Start Date

April 1 2022

End Date

June 30 2024

Last Update

January 11 2022

Active Locations (16)

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Page 1 of 4 (16 locations)

1

University of California

San Francisco, California, United States, 94118

2

Children's Hospital Colorado

Aurora, Colorado, United States, 80045

3

Children's National Hospital

Washington D.C., District of Columbia, United States, 20010

4

University of Miami

Coral Gables, Florida, United States, 33124