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

9. června 2026 aktualizováno: 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.

Přehled studie

Postavení

Zatím nenabíráme

Detailní popis

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.

Typ studie

Pozorovací

Zápis (Odhadovaný)

10

Kontakty a umístění

Tato část poskytuje kontaktní údaje pro ty, kteří studii provádějí, a informace o tom, kde se tato studie provádí.

Studijní místa

      • Beijing, Čína
        • Research Site
        • Kontakt:

Kritéria účasti

Výzkumníci hledají lidi, kteří odpovídají určitému popisu, kterému se říká kritéria způsobilosti. Některé příklady těchto kritérií jsou celkový zdravotní stav osoby nebo předchozí léčba.

Kritéria způsobilosti

Věk způsobilý ke studiu

  • Dospělý
  • Starší dospělý

Přijímá zdravé dobrovolníky

Ne

Metoda odběru vzorků

Vzorek nepravděpodobnosti

Studijní populace

BAG3 DCM

Popis

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).

Studijní plán

Tato část poskytuje podrobnosti o studijním plánu, včetně toho, jak je studie navržena a co studie měří.

Jak je studie koncipována?

Detaily designu

Kohorty a intervence

Skupina / kohorta
Intervence / Léčba
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.
Observační, žádný zásah

Co je měření studie?

Primární výstupní opatření

Měření výsledku
Popis opatření
Časové okno
changes in cardiac imaging parameters, left ventricular ejection fraction (LVEF) and global longitudinal strain (GLS)
Časové okno: 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)
Časové okno: 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)
Časové okno: 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)
Časové okno: 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

Sekundární výstupní opatření

Měření výsledku
Popis opatření
Časové okno
Circulating Biomarkers
Časové okno: 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)
Časové okno: 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)
Časové okno: 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)
Časové okno: 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)
Časové okno: 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
Časové okno: 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

Spolupracovníci a vyšetřovatelé

Zde najdete lidi a organizace zapojené do této studie.

Sponzor

Termíny studijních záznamů

Tato data sledují průběh záznamů studie a předkládání souhrnných výsledků na ClinicalTrials.gov. Záznamy ze studií a hlášené výsledky jsou před zveřejněním na veřejné webové stránce přezkoumány Národní lékařskou knihovnou (NLM), aby se ujistily, že splňují specifické standardy kontroly kvality.

Hlavní termíny studia

Začátek studia (Odhadovaný)

29. června 2026

Primární dokončení (Odhadovaný)

29. června 2029

Dokončení studie (Odhadovaný)

29. června 2029

Termíny zápisu do studia

První předloženo

29. dubna 2026

První předloženo, které splnilo kritéria kontroly kvality

9. června 2026

První zveřejněno (Aktuální)

15. června 2026

Aktualizace studijních záznamů

Poslední zveřejněná aktualizace (Aktuální)

15. června 2026

Odeslaná poslední aktualizace, která splnila kritéria kontroly kvality

9. června 2026

Naposledy ověřeno

1. června 2026

Více informací

Termíny související s touto studií

Plán pro data jednotlivých účastníků (IPD)

Plánujete sdílet data jednotlivých účastníků (IPD)?

ANO

Popis plánu 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.

Časový rámec sdílení 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.

Kritéria přístupu pro sdílení 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.

Informace o lécích a zařízeních, studijní dokumenty

Studuje lékový produkt regulovaný americkým FDA

Ne

Studuje produkt zařízení regulovaný americkým úřadem FDA

Ne

Tyto informace byly beze změn načteny přímo z webu clinicaltrials.gov. Máte-li jakékoli požadavky na změnu, odstranění nebo aktualizaci podrobností studie, kontaktujte prosím register@clinicaltrials.gov. Jakmile bude změna implementována na clinicaltrials.gov, bude automaticky aktualizována i na našem webu .

Klinické studie na Observační, žádný zásah

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