Congenital Heart Initiative-Redefining Outcomes and Navigation to Adult Centered Care
Public ClinicalTrials.gov record NCT05185232. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.
Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.
Official title
Utilizing PCORnet to Support Transition From Pediatric to Adult Centered Care and Reduce Gaps in Recommended Care in Patients With Congenital Heart Disease
Brief summary
Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.
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 greatest challenge to conducting comparative effectiveness research in CHD patients are the poor rates of successful transition from pediatric to adult centered cardiology care and high rates of gaps in recommend care for adults with CHD. This study will use PCORnet to examine the effects of gaps in recommended care (cardiology visits) on patient prioritized outcomes for adults with non-complex and complex subtypes of CHD. This system will be established through 14 (12 recruiting) PCORnet affiliated institutions and linkage to the Congenital Heart Initiative registry (https://chi.eurekaplatform.org), the first patient powered registry for adults with CHD. This registry launched in December 2020, and is IRB approved at Children's National Hospital (IRB# Pro00014697). Funded by PCORI, this project will recruit patients at the 12 PCORnet affiliated institutions and will invite them to contribute their health records data and then join the established Congenital Heart Initiative. By enrolling patients and linking their PCORnet (health record) data into an existing adult congenital heart disease (ACHD) specific registry, future interventions to reduce gaps in care based on study findings can be rapidly implemented in real-world settings through the strong partnerships established with key CHD stakeholders.
Study identification
- NCT ID
- NCT05185232
- Recruitment status
- Not listed
- Study type
- Observational
- Phase
- Not listed
- Enrollment
- 3,000 participants
Conditions and interventions
Eligibility (public fields only)
- Age range
- 18 Years and older
- Sex
- All
- Healthy volunteers
- Accepts healthy volunteers
This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.
Study timeline
- Start date
- Apr 1, 2022 (Estimated)
- Primary completion
- Oct 1, 2023 (Estimated)
- Completion
- Jun 30, 2024 (Estimated)
- Last update posted
- Jan 11, 2022
2022 – 2024
United States locations
- U.S. sites
- 16
- U.S. states
- 9
- U.S. cities
- 12
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| University of California | San Francisco | California | 94118 | — |
| Children's Hospital Colorado | Aurora | Colorado | 80045 | — |
| Children's National Hospital | Washington D.C. | District of Columbia | 20010 | — |
| University of Miami | Coral Gables | Florida | 33124 | — |
| University of Florida | Gainesville | Florida | 32611 | — |
| Nicklaus Children's Hospital | Miami | Florida | 33155 | — |
| Louisiana Public Health Institute | New Orleans | Louisiana | 70112 | — |
| Ochsner | New Orleans | Louisiana | 70121 | — |
| Mount Sinai | New York | New York | 10003 | — |
| NYU Langone Health | New York | New York | 10016 | — |
| Columbia Presbyterian | New York | New York | 10034 | — |
| Weill Cornell Medicine | New York | New York | 10065 | — |
| Duke Coordinating Center | Durham | North Carolina | 27701 | — |
| Cincinnati Children's Hospital | Cincinnati | Ohio | 45229 | — |
| Nationwide Children's | Columbus | Ohio | 43205 | — |
| Children's Hospital of Philadelphia | Philadelphia | Pennsylvania | 19104 | — |
Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT05185232, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
- What this page does not do
- No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
- Where the data comes from
- Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
- Last refresh
- Last update posted Jan 11, 2022 · Synced Oct 25, 2026
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Open the official record
The complete public registry record, listed eligibility criteria, and available contact information for NCT05185232 live on ClinicalTrials.gov.