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Observational Study of Natural History of BAG3 Gene Mutation-Associated Dilated Cardiomyopathy in Chinese Adults

9 giugno 2026 aggiornato da: AstraZeneca

Natural History of BAG3 Gene Mutation-Associated Dilated Cardiomyopathy in Chinese Adults: A Multicentre, Prospective, Observational Cohort Study

This is a multicentre, prospective cohort study designed to elucidate the natural history of dilated cardiomyopathy (DCM) associated with specific gene mutations in Chinese patients. By establishing a cohort of patients with inherited cardiomyopathy, the study will collect comprehensive data, including demographic characteristics, disease history, clinical features, prior treatments, current treatment patterns, clinical outcomes, and patient-reported outcomes (PROs). The objective is to describe the disease profile, current diagnostic and therapeutic landscape, clinical progression, and prognosis of this specific patient population in China. The data generated will provide a foundational basis for deepening the understanding of disease progression, identifying unmet clinical needs, and exploring potential surrogate endpoints for future clinical trials in drug development. The study plans to enroll 10 eligible patients with BCL-2-associated athanogene 3 (BAG3)-associated inherited DCM from 3 research sites across China.

Panoramica dello studio

Stato

Non ancora reclutamento

Descrizione dettagliata

This is a multicentre, prospective, observational natural history study targeting Chinese adults with BAG3 DCM. Approximately 10 patients with BAG3 DCM will be enrolled from 3 research sites in China. Comprehensive clinical data, including demographic characteristics, medical history, clinical manifestations, treatment records, clinical outcomes, and PROs, will be collected. After completing the informed consent process, eligible patients will undergo screening and enrollment, planned to last 1 year. Patients with a confirmed diagnosis of BAG3 DCM will be directly enrolled; those initially diagnosed only with DCM will undergo genetic testing (e.g., whole-exome sequencing), and carriers of BAG3 mutations will be included upon confirmation. After enrollment, participants will undergo a comprehensive baseline assessment of clinical parameters (including imaging, cardiopulmonary function, and laboratory tests) and enter a subsequent 2-year follow-up evaluation period. Patient follow-up will continue until any of the following events occurs: death, study withdrawal, loss to follow-up (defined as failure to contact via three attempts including telephone, WeChat, medical record review, and contact with family members/treating physicians), early study termination/suspension, or completion of the scheduled 2-year follow-up period.

Medical history and cardiomyopathy treatment history at baseline (e.g., medications, surgical procedures, hospitalizations / resuscitation records) will be retrieved from patients' electronic medical records at enrollment. After enrollment, prospective data collection will include information from routine clinical practice, investigator-solicited clinical outcomes, and Patient-reported outcomes (PROs). An Electronic Data Capture (EDC) system will be used for data collection. All enrolled cardiomyopathy patients will be followed at regular intervals until the end of the observation follow-up period.

This study will collect electronic medical record data from cardiomyopathy patients at 3 research sites in China. Data sources include hospital electronic health records, medical records, and patient-reported outcome questionnaires. Routine clinical data (including but not limited to baseline information, assessments, and treatment records) will be collected during routine clinical visits or via remote questionnaires. Follow-up frequency is set at baseline (Day 1, V1), Month 3 (V2), Month 6 (V3), Month 12 (V4), Month 18 (V5), and Month 24 (V6). All data will be collected and managed using an EDC system.

Tipo di studio

Osservativo

Iscrizione (Stimato)

10

Contatti e Sedi

Questa sezione fornisce i recapiti di coloro che conducono lo studio e informazioni su dove viene condotto lo studio.

Luoghi di studio

      • Beijing, Cina
        • Research Site
        • Contatto:

Criteri di partecipazione

I ricercatori cercano persone che corrispondano a una certa descrizione, chiamata criteri di ammissibilità. Alcuni esempi di questi criteri sono le condizioni generali di salute di una persona o trattamenti precedenti.

Criteri di ammissibilità

Età idonea allo studio

  • Adulto
  • Adulto più anziano

Accetta volontari sani

No

Metodo di campionamento

Campione non probabilistico

Popolazione di studio

BAG3 DCM

Descrizione

Inclusion Criteria:

  • Participants must meet all of the following criteria to be eligible for inclusion:

    1. Age ≥18 years at screening, male or female;
    2. Presence of a BAG3 pathogenic or likely pathogenic mutation interpreted according to the American College of Medical Genetics and Genomics (ACMG) guidelines;
    3. Heart failure (HF) Stage B or C, New York Heart Association (NYHA) functional class I-III;
    4. LVEF ≤50%. If LVEF is 45%-50% and the participant is classified as Stage B heart failure or NYHA Class I, N-terminal pro-B-type natriuretic peptide (NT-proBNP) must be ≥300 pg/mL. LVEF measurement must be based on echocardiography or cardiac magnetic resonance results within the past 12 months;
    5. Willing and able to comply with all scheduled visits, laboratory tests, and other study procedures;
    6. Capable of providing signed informed consent, including compliance with the requirements and restrictions listed in the informed consent form and this protocol.

Exclusion Criteria:

  • Participants meeting any of the following criteria will be excluded:

    1. Acute decompensated heart failure within 1 month prior to enrollment;
    2. Any of the following within 3 months prior to screening:

      • Myocardial infarction
      • Cardiac surgical procedures (excluding pacemaker/implantable cardioverter defibrillator/cardiac resynchronization therapy implantation)
      • Implantable cardioverter defibrillator (ICD) implantation
      • Acute coronary syndrome
      • Hospitalization for cardiac arrhythmia
    3. History of heart transplantation;
    4. Estimated glomerular filtration rate (eGFR) <30 mL/min/1.73 m² (calculated using the Chronic Kidney Disease Epidemiology Collaboration formula);
    5. Active malignancy or malignancy diagnosed within 3 years prior to screening, except for:

      • Surgically cured in situ malignancies
      • Surgically cured early-stage cancers (including breast, prostate, skin [basal cell carcinoma, squamous cell carcinoma], thyroid, or cervical cancer)
      • Other early-stage malignancies with an expected 2-year recurrence rate ≤20%, approved by the Medical Monitor
    6. Non-cardiac condition limiting life expectancy to <1 year;
    7. Presence of any of the following cardiac conditions:

      • Other forms of cardiomyopathy contributing to heart failure (e.g., inflammatory or infiltrative cardiomyopathy)
      • Clinically significant cardiac anatomic abnormalities (e.g., left ventricular aneurysm)
      • Significant coronary artery disease (e.g., prior revascularization, exercise-induced angina)
      • Uncorrected, hemodynamically significant (moderate to severe) primary structural valvular disease not due to heart failure (investigator's judgment)
    8. Any severe concurrent disease (e.g., active systemic infection) that, in the investigator's judgment, would make the participant unsuitable for study participation;
    9. Any medical or psychiatric condition that may increase study risk, including:

      • Active or recent (within 1 year) suicidal ideation/behavior
      • Laboratory abnormalities
      • Other conditions deemed unsuitable by the investigator
    10. Administration of any investigational drug within 30 days prior to screening;
    11. Prior gene or cell therapy treatment;
    12. Anticipated need for cardiac transplantation, left ventricular assist device implantation, or other cardiac surgery within the next 3 months (investigator's assessment);
    13. More than 3 first-degree relatives from the same family enrolled concurrently (excluding the participant).

Piano di studio

Questa sezione fornisce i dettagli del piano di studio, compreso il modo in cui lo studio è progettato e ciò che lo studio sta misurando.

Come è strutturato lo studio?

Dettagli di progettazione

Coorti e interventi

Gruppo / Coorte
Intervento / Trattamento
patients with BAG3 DCM
Approximately 10 patients with BAG3 DCM will be enrolled from 3 research sites in China. Comprehensive clinical data, including demographic characteristics, medical history, clinical manifestations, treatment records, clinical outcomes, and PROs, will be collected.
Osservazionale, nessuno intervento

Cosa sta misurando lo studio?

Misure di risultato primarie

Misura del risultato
Misura Descrizione
Lasso di tempo
changes in cardiac imaging parameters, left ventricular ejection fraction (LVEF) and global longitudinal strain (GLS)
Lasso di tempo: Baseline (at Day 1 post-enrollment), 12 months and 24 months
Primary endpoints include changes from baseline in cardiac structure and function parameters, left ventricular ejection fraction (LVEF) and global longitudinal strain (GLS), at Month 12 and subsequent follow-ups. Changes in the above imaging assessment results are presented as continuous numerical variables and the results of changes expressed as percentages.
Baseline (at Day 1 post-enrollment), 12 months and 24 months
changes in cardiac imaging parameters, left ventricular end diastolic diameter (LVEDD)
Lasso di tempo: Baseline (at Day 1 post-enrollment), 12 months and 24 months
Primary endpoints include changes from baseline in cardiac structure and function parameters, left ventricular end diastolic diameter (LVEDD), at Month 12 and subsequent follow-ups. Changes in the above imaging assessment results are presented as continuous numerical variables and the results of changes expressed as percentages.
Baseline (at Day 1 post-enrollment), 12 months and 24 months
changes in cardiac imaging parameters, left ventricular end systolic volume index (LVESVi) and left ventricular end diastolic volume index (LVEDVi)
Lasso di tempo: Baseline (at Day 1 post-enrollment), 12 months and 24 months
Primary endpoints include changes from baseline in cardiac structure and function parameters, left ventricular end systolic volume index (LVESVi) and left ventricular end diastolic volume index (LVEDVi), at Month 12 and subsequent follow-ups. Changes in the above imaging assessment results are presented as continuous numerical variables and the results of changes expressed as percentages.
Baseline (at Day 1 post-enrollment), 12 months and 24 months
changes in cardiac imaging parameters, left ventricular mass index (LVMi)
Lasso di tempo: Baseline (at Day 1 post-enrollment), 12 months and 24 months
Primary endpoints include changes from baseline in cardiac structure and function parameters, left ventricular mass index (LVMi), at Month 12 and subsequent follow-ups. Changes in the above imaging assessment results are presented as continuous numerical variables and the results of changes expressed as percentages.
Baseline (at Day 1 post-enrollment), 12 months and 24 months

Misure di risultato secondarie

Misura del risultato
Misura Descrizione
Lasso di tempo
Circulating Biomarkers
Lasso di tempo: Baseline (at Day 1 post-enrollment), 3 months, 6 months, 12 months, 18 months, and 24 months
Descriptive summaries of High-sensitivity cardiac troponin I (hs-cTnI), High-sensitivity cardiac troponin T (hs-cTnT), and N-terminal pro b-type natriuretic peptide (NT-proBNP), and other circulating biomarkers level at baseline and each follow-up visit, including absolute and relative percentage changes from baseline. All of the above test parameters are measured in ng/L, and the changes are treated as continuous numerical variables.
Baseline (at Day 1 post-enrollment), 3 months, 6 months, 12 months, 18 months, and 24 months
Peak oxygen capacity (VO₂) measured by cardiopulmonary exercise testing (CPET)
Lasso di tempo: Baseline (at Day 1 post-enrollment) and 12 months.
Peak oxygen capacity (VO₂) measured by cardiopulmonary exercise testing (CPET) will be summarized at baseline and each time point, along with absolute and relative changes over time.
Baseline (at Day 1 post-enrollment) and 12 months.
Kansas City Cardiomyopathy Questionnaire-23 (KCCQ-23)
Lasso di tempo: Baseline (at Day 1 post-enrollment), 3 months, 6 months, 12 months, 18 months, and 24 months
Changes from baseline in KCCQ-23 overall and domain scores will be described using absolute and relative changes. Raw summary scores are converted to a 0-100 scale, with higher scores indicating better health status.
Baseline (at Day 1 post-enrollment), 3 months, 6 months, 12 months, 18 months, and 24 months
EuroQol 5-Dimension 5-Level Health Scale (EQ-5D-5L)
Lasso di tempo: Baseline (at Day 1 post-enrollment), 3 months, 6 months, 12 months, 18 months, and 24 months
Changes from baseline in EQ-5D-5L overall and domain scores will be described using absolute and relative changes. The EQ-5D was developed by the EuroQol Group to provide a simple, generic measure of health. The EQ-5D primarily consists of two parts: the EQ-5D descriptive system and the EQ-5D visual analogue scale (VAS). The score ranges from <0 to 1. Higher scores men a better outcome.
Baseline (at Day 1 post-enrollment), 3 months, 6 months, 12 months, 18 months, and 24 months
The medical outcomes study 36-item short-form health survey (SF-36)
Lasso di tempo: Baseline (at Day 1 post-enrollment), 3 months, 6 months, 12 months, 18 months, and 24 months
Changes from baseline in SF-36 overall and domain scores will be described using absolute and relative changes. The questionnaire comprises 8 health domain scales. The raw scores for each health domain scale are converted to a 0-100 scale score and can then be transformed into norm-based T-scores (Mean = 50, Standard Deviation = 10) using scoring software provided by the developer.
Baseline (at Day 1 post-enrollment), 3 months, 6 months, 12 months, 18 months, and 24 months
The Frequency and Rate of Notable Cardiac Status Changes
Lasso di tempo: Baseline (at Day 1 post-enrollment), 3 months, 6 months, 12 months, 18 months, and 24 months
The cumulative number and frequency of notable cardiac status events will be reported. Notable cardiac status changes include but are not limited to: new or worsening signs/symptoms of fluid overload (e.g., edema, pulmonary congestion), new or worsening renal impairment (e.g., cardiorenal syndrome, acute renal failure), heart failure (HF) hospitalization, need for unscheduled intravenous diuretics, HF exacerbation, cardiovascular death, myocardial infarction (MI), hospitalization for unstable angina, coronary revascularization, stroke, new or worsening ventricular or supraventricular arrhythmias, sudden cardiac death (SCD), or SCD-equivalent events (e.g., appropriate implantable cardioverter-defibrillator [ICD] shock, sustained ventricular arrhythmia). Event rates per 100 patient-years with 95% confidence intervals will be calculated.
Baseline (at Day 1 post-enrollment), 3 months, 6 months, 12 months, 18 months, and 24 months

Collaboratori e investigatori

Qui è dove troverai le persone e le organizzazioni coinvolte in questo studio.

Sponsor

Studiare le date dei record

Queste date tengono traccia dell'avanzamento della registrazione dello studio e dell'invio dei risultati di sintesi a ClinicalTrials.gov. I record degli studi e i risultati riportati vengono esaminati dalla National Library of Medicine (NLM) per assicurarsi che soddisfino specifici standard di controllo della qualità prima di essere pubblicati sul sito Web pubblico.

Studia le date principali

Inizio studio (Stimato)

29 giugno 2026

Completamento primario (Stimato)

29 giugno 2029

Completamento dello studio (Stimato)

29 giugno 2029

Date di iscrizione allo studio

Primo inviato

29 aprile 2026

Primo inviato che soddisfa i criteri di controllo qualità

9 giugno 2026

Primo Inserito (Effettivo)

15 giugno 2026

Aggiornamenti dei record di studio

Ultimo aggiornamento pubblicato (Effettivo)

15 giugno 2026

Ultimo aggiornamento inviato che soddisfa i criteri QC

9 giugno 2026

Ultimo verificato

1 giugno 2026

Maggiori informazioni

Termini relativi a questo studio

Piano per i dati dei singoli partecipanti (IPD)

Hai intenzione di condividere i dati dei singoli partecipanti (IPD)?

Descrizione del piano IPD

Qualified researchers can request access to anonymized individual patient-level data from AstraZeneca group of companies sponsored clinical trials via the request portal Vivli.org. All requests will be evaluated as per the AZ disclosure commitment: https://astrazenecagrouptrials.pharmacm.com/ST/Submission/Disclosure.

"Yes", indicates that AZ are accepting requests for IPD, but this does not mean all requests will be approved.

Periodo di condivisione IPD

AstraZeneca will meet or exceed data availability as per the commitments made to the EFPIA/PhRMA Data-Sharing Principles. For details of our timelines, please refer to our disclosure commitment at https://astrazenecagrouptrials.pharmacm.com/ST/Submission/Disclosure.

Criteri di accesso alla condivisione IPD

When a request has been approved AstraZeneca will provide access to the anonymized individual patient-level data via secure research environment Vivli.org. A Signed Data Usage Agreement (non-negotiable contract for data accessors) must be in place before accessing requested information.

Informazioni su farmaci e dispositivi, documenti di studio

Studia un prodotto farmaceutico regolamentato dalla FDA degli Stati Uniti

No

Studia un dispositivo regolamentato dalla FDA degli Stati Uniti

No

Queste informazioni sono state recuperate direttamente dal sito web clinicaltrials.gov senza alcuna modifica. In caso di richieste di modifica, rimozione o aggiornamento dei dettagli dello studio, contattare register@clinicaltrials.gov. Non appena verrà implementata una modifica su clinicaltrials.gov, questa verrà aggiornata automaticamente anche sul nostro sito web .

Prove cliniche su Osservazionale, nessuno intervento

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