Adult Congenital Heart Disease International EValuation of the Effectiveness of SGLT2i Registry

NCT ID: NCT06932081

Last Updated: 2025-04-23

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

RECRUITING

Total Enrollment

400 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-01-01

Study Completion Date

2027-12-31

Brief Summary

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This real-world, international registry aims to evaluate the current experience with sodium-glucose cotransporter 2 inhibitors (SGLT2i) in adult congenital heart disease (ACHD) patients by investigating the prescription patterns, safety, tolerability, and potential beneficial effects on heart failure-related outcomes.

Detailed Description

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In the adult congenital heart disease (ACHD) population, heart failure currently represents the main cause of morbidity and mortality. The etiology of ACHD-related heart failure is heterogenous, and there is limited evidence for pharmacological treatment options for this population.

Sodium-glucose cotransporter 2 inhibitors (SGLT2i) are a novel pillar in the treatment of conventional LV heart failure. SGLT2i have been shown to reduce the risk of worsening heart failure and cardiovascular-related death in patients with LV heart failure.

While the exact mechanisms of action are still to be elucidated, SGLT2i seem to address heart failure by targeting several pathways. These include but are not limited to; a decrease in renin-angiotensin and sympathetic nervous system activation, a decrease in pressure overload-induced myocardial fibrosis, reverse cardiac remodeling, and improvement in myocardial energetics.

Given the compelling evidence on the effectiveness of SGLT2i over a broad range of cardiac dysfunction and initial promising reports of its utilization in the field of ACHD, SGLT2i deserve further exploration in the group of ACHD patients.

This real-world, international registry aims to evaluate the current experience with SGLT2i in ACHD patients by investigating the prescription patterns, safety, tolerability, and potential beneficial effects on heart failure-related outcomes.

Project design:

Data of all ACHD patients who were started on an SGLT2i will be collected in a real-world, international registry. Only data resulting from routine clinical care will be collected from the electronic health records at the participating centers, and participants will not undergo any interventions for this project. Data will be collected from 1 year before starting with the SGLT2i to most recent follow-up after starting with the SGLT2i, to evaluate if SGLT2i therapy halts the progression of clinical deterioration in ACHD patients with heart failure and can improve heart failure-related outcomes.

Conditions

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Adult Congenital Heart Disease Congenital Heart Disease Systemic Right Ventricle Transposition of the Great Arteries Congenitally Corrected Transposition of the Great Arteries Fontan Single Ventricle Tetralogy of Fallot (TOF)

Study Design

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Observational Model Type

COHORT

Study Time Perspective

OTHER

Study Groups

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ACHD patients treated with SGLT2i

All participants included in the registry have to have a congenital heart defect, be ≥ 18 years old, and receive (or have received) treatment with SGLT2i.

SGLT2 inhibitors

Intervention Type DRUG

Treatment with any type and dose of sodium-glucose cotransporter 2 inhibitor.

Interventions

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SGLT2 inhibitors

Treatment with any type and dose of sodium-glucose cotransporter 2 inhibitor.

Intervention Type DRUG

Eligibility Criteria

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Inclusion Criteria

* Congenital heart defect.
* Age ≥ 18 years.
* Initiated on treatment with an SGLT2i.

Exclusion Criteria

\- No consent for data collection.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Leiden University Medical Center

OTHER

Sponsor Role lead

Responsible Party

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aegorova

Principal Investigator

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Anastasia D. Egorova, MD PhD

Role: PRINCIPAL_INVESTIGATOR

Leiden University Medical Center

Locations

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Johns Hopkins University

Baltimore, Maryland, United States

Site Status RECRUITING

Helen DeVos Children's Hospital

Grand Rapids, Michigan, United States

Site Status NOT_YET_RECRUITING

Mount Sinai Fuster Heart Hospital

New York, New York, United States

Site Status RECRUITING

Leiden University Medical Center (LUMC)

Leiden, South Holland, Netherlands

Site Status RECRUITING

Amsterdam University Medical Center

Amsterdam, , Netherlands

Site Status RECRUITING

University Medical Center Utrecht

Utrecht, , Netherlands

Site Status RECRUITING

Zan Mitrev Clinic

Skopje, , North Macedonia

Site Status RECRUITING

University Hospital of Wales

Cardiff, , United Kingdom

Site Status RECRUITING

Golden Jubilee University National Hospital

Glasgow, , United Kingdom

Site Status RECRUITING

Barts Heart Centre

London, , United Kingdom

Site Status RECRUITING

Countries

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United States Netherlands North Macedonia United Kingdom

Central Contacts

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Ralph M.L. Neijenhuis, MD

Role: CONTACT

+31 71 5262020

Anastasia D. Egorova, MD PhD

Role: CONTACT

+31 71 5262020

Facility Contacts

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Ralph M.L. Neijenhuis, MD

Role: primary

+31 71 5262020

References

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Neijenhuis RML, MacDonald ST, Zemrak F, Mertens BJA, Dinsdale A, Hunter A, Walker NL, Swan L, Reddy S, Rotmans JI, Jukema JW, Jongbloed MRM, Veldtman GR, Egorova AD. Effect of Sodium-Glucose Cotransporter 2 Inhibitors in Adults With Congenital Heart Disease. J Am Coll Cardiol. 2024 Apr 16;83(15):1403-1414. doi: 10.1016/j.jacc.2024.02.017. Epub 2024 Mar 25.

Reference Type BACKGROUND
PMID: 38530688 (View on PubMed)

Neijenhuis RML, Nederend M, Jongbloed MRM, Kies P, Rotmans JI, Vliegen HW, Jukema JW, Egorova AD. The potential of sodium-glucose cotransporter 2 inhibitors for the treatment of systemic right ventricular failure in adults with congenital heart disease. Front Cardiovasc Med. 2023 Jun 26;10:1093201. doi: 10.3389/fcvm.2023.1093201. eCollection 2023.

Reference Type BACKGROUND
PMID: 37435053 (View on PubMed)

Egorova AD, Nederend M, Tops LF, Vliegen HW, Jongbloed MRM, Kies P. The first experience with sodium-glucose cotransporter 2 inhibitor for the treatment of systemic right ventricular failure. ESC Heart Fail. 2022 Jun;9(3):2007-2012. doi: 10.1002/ehf2.13871. Epub 2022 Mar 30.

Reference Type BACKGROUND
PMID: 35355435 (View on PubMed)

Other Identifiers

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2022-068

Identifier Type: -

Identifier Source: org_study_id

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