Swiss Cardiac Amyloidosis REgistry (Swiss-CARE)

NCT ID: NCT04776824

Last Updated: 2025-05-06

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

300 participants

Study Classification

OBSERVATIONAL

Study Start Date

2001-02-22

Study Completion Date

2031-05-01

Brief Summary

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Cardiac transthyretin amyloidosis (ATTR), caused by ventricular depositions of misfolded transthyretin, results in an infiltrative cardiomyopathy, progressing from pronounced myocardial wall thickening, diastolic and systolic dysfunction to the development of terminal heart failure. Recently, treatment options for TTR amyloidosis have become available. However costs for therapy are enormous and previous trials were not able to differentiate between patients that might benefit from treatment and those without a need for treatment.

the investigators study aims to determine markers, as assessed by cardiac magnet resonance imaging (CMR) feature tracking (FT) and T1- and T2- mapping, that might reliably indicate disease severity and could help to identify patients that might benefit from (ongoing) TTR stabilization treatment.

Detailed Description

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Cardiac transthyretin amyloidosis (ATTR), the most common amyloidosis form with cardiac involvement, is caused by tissue deposition of misfolded TTR, a transport Protein for thyroxine and retinol. Ventricular depositions of amyloid fibrils results in an infiltrative cardiomyopathy, progressing from pronounced myocardial wall thickening, to diastolic and systolic dysfunction and finally chronic heart failure.

While treatment options are now available, it remains unclear how to monitor therapy response and disease progression. No makers have been identified that predict outcome prior to initiation of therapy, thus patient selection for therapy remains challenging.

The investigators study will address these issues and will provide systematically assessed CMR data before and over the course of 18 months after therapy initiation. Clinical and laboratory follow-up will be performed every 3-6 months. The investigators study is based on an open, uncontrolled, structured collection of retrospective and prospective data from all patients diagnosed with amyloidosis at the Inselspital Bern with the aim to follow patients undergoing therapy.

The investigators hypothesize that CMR feature tracking (FT) and measures of T1- and T2- mapping, such as extracellular volume (ECV) may better correlate with disease severity and help to identify patients likely to benefit from (ongoing) TTR stabilizing therapy. Beside standard CMR assessments, the investigators will use CMR feature tracking to quantify global and regional myocardial function. FT has proven to be an excellent predictor in various cardiomyopathies.

The proposed study will evaluate the potential of CMR to identify patients likely to benefit from therapy, monitor treatment response and balance individual patient benefit and health care cost.

Conditions

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Amyloid Cardiomyopathy

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

PROSPECTIVE

Study Groups

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Patients with confirmed amyloidosis

Confirmed diagnosis of amyloidosis w/wo cardiac involvement

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Confirmed diagnosis of amyloidosis w/wo cardiac involvement
* General Consent

Exclusion Criteria

* Inability to give consent or existence of a written or documented oral refusal of the data subject.\<18 years of age
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Insel Gruppe AG, University Hospital Bern

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Christoph Gräni, MD, PhD

Role: PRINCIPAL_INVESTIGATOR

Department of Cardiology, University Hospital Bern, Inselspital, Bern

Locations

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USB

Basel, , Switzerland

Site Status NOT_YET_RECRUITING

Department of Cardiology, University Hospital Bern, Inselspital, Bern

Bern, , Switzerland

Site Status RECRUITING

HUG

Geneva, , Switzerland

Site Status RECRUITING

CHUV

Lausanne, , Switzerland

Site Status RECRUITING

LUKS

Lucerne, , Switzerland

Site Status RECRUITING

KSSG

Sankt Gallen, , Switzerland

Site Status RECRUITING

Stadtspital Triemli

Zurich, , Switzerland

Site Status RECRUITING

Countries

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Switzerland

Central Contacts

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Christoph Gräni, MD, PhD

Role: CONTACT

+41 31 632 4508

Moritz Hundertmark, MD, PhD

Role: CONTACT

+41 31 63 2 40 86

Facility Contacts

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Otmar Pfister, Prof. Dr.

Role: primary

+41 61 328 74 82

Christoph Gräni, Prof

Role: primary

+41 31 632 45 08

Philippe Meyer

Role: primary

+41 22 372 13 13 ext. Dr.

Sarah Hugelshofer, Dr. med.

Role: primary

+41 21 314 11 11

Simon Stämpfli, Dr. med

Role: primary

+41 41 205 51 48

Niklas Ehl, Dr. med

Role: primary

+41 71 494 10 51

Annina Studer Brüngger, Dr. med.

Role: primary

+41 44 416 34 12

Other Identifiers

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2021-00135

Identifier Type: -

Identifier Source: org_study_id

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