NCT05776212

Brief Summary

Transthyretin amyloid cardiomyopathy (ATTR-CM), is a heart muscle disease that's stops the heart muscle working properly. With an ageing population, it is increasingly common but untreated, it has a poor prognosis. Several novel expensive treatments have become available, although we do not understand exactly how they work and why some patients respond, and others do not. The challenge is to develop better methods for monitoring the effects of these treatments, maximizing their benefits and cost-effectiveness. In I-CARE we aim to bring a new imaging technique, named 18F-fluoride PET, to the clinic and thereby improve the care of patients with ATTR-CM. Hypotheses:

  1. 1.A delayed imaging protocol and state-of-the-art PET motion correction will optimise 18F-fluoride imaging in ATTR-CM and provide a clear threshold in myocardial TBR values for the diagnosis of ATTR-CM.
  2. 2.Optimised 18F-fluoride PET will provide a quantitative marker of the ATTR-CM burden that will allow disease progression and treatment response to be tracked.
  3. 3.Myocardial 18F-fluoride TBR values will reduce in patients responding to tafamidis treatment and increase in non-responders and patients not receiving therapy

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
140

participants targeted

Target at P50-P75 for all trials

Timeline
5mo left

Started Aug 2021

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress92%
Aug 2021Sep 2026

Study Start

First participant enrolled

August 25, 2021

Completed
1.4 years until next milestone

First Submitted

Initial submission to the registry

January 26, 2023

Completed
2 months until next milestone

First Posted

Study publicly available on registry

March 20, 2023

Completed
3.5 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

September 30, 2026

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

September 30, 2026

Last Updated

June 27, 2025

Status Verified

June 1, 2025

Enrollment Period

5.1 years

First QC Date

January 26, 2023

Last Update Submit

June 23, 2025

Conditions

Keywords

AmyloidosisHeart failure18F-fluoride positron emission tomography (PET)Cardiovascular magnetic resonance (CMR)Tafamidis

Outcome Measures

Primary Outcomes (1)

  • TBR threshold

    Tissue to background ratio with a good specificity and sensitivity to differentiatie subjects with ATTR-CM from subjects with phenocopies.

    1.5 years

Secondary Outcomes (10)

  • Change in TBR

    2.5 years

  • Change in cardiac indices on CMR

    2.5 years

  • Change in cardiac biomarkers

    2.5 years

  • Change in clinical measures

    2.5 years

  • TBR threshold

    6 months

  • +5 more secondary outcomes

Study Arms (4)

Work package 1 - Optimisation of 18F-fluoride PET in ATTR-CM

Optimise 18F-fluoride PET imaging of ATTR-CM with increased myocardial tissue to background ratio (TBR) uptake values to provide a state-of-the-art imaging modality for use in the other work packages. (n=15, ATTR-CM subjects)

Radiation: 18F-fluoride PET

Work package 2 - Differentiation ATTR-CM from phenocopies

Establish the optimised 18F-fluoride TBR threshold that best differentiates ATTR-CM (n=100) from phenocopies (subjects with light chain amyloidosis, n=20 and subjects with hypertrophic cardiomyopathy, n=20).

Radiation: 18F-fluoride PET

Work package 3 - In vivo calibration of 18F-fluoride PET

In vivo calibration of 18F-fluoride PET as a marker of the myocardial ATTR burden, calibrating optimised TBR values against the current imaging standard cardiac magnetic resonance imaging extracellular volume. (Subjects with ATTR-CM, n=100)

Radiation: 18F-fluoride PET

Work package 4 - Disease progression and treatment response

Establish ability of 18F-fluoride PET to track disease progression and treatment response in ATTR-CM at one year follow up. (Subjects with ATTR-CM, n=100)

Radiation: 18F-fluoride PET

Interventions

Positron emission tomography using 18F-fluoride as a tracer

Work package 1 - Optimisation of 18F-fluoride PET in ATTR-CMWork package 2 - Differentiation ATTR-CM from phenocopiesWork package 3 - In vivo calibration of 18F-fluoride PETWork package 4 - Disease progression and treatment response

Eligibility Criteria

Age40 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodProbability Sample
Study Population

* Patients with cardiac transthyretin amyloid * Patients with cardiac light chain amyloid * Patients with hypertrophic cardiomyopathy

You may qualify if:

  • Completion of informed consent
  • Age \> 40 years for patients with ATTR or AL cardiac amyloidosis and age \>30 years for patients with HCM
  • ATTR cardiac amyloid according to Expert Consensus Recommendations
  • AL amyloidosis according to Expert Consensus Recommendations
  • Hypertrophic cardiomyopathy according to European Society of Cardiology guidelines

You may not qualify if:

  • Inability or unwilling to give informed consent
  • Women who are pregnant, breastfeeding or of child-bearing potential (women who have experienced menarche, are pre-menopausal and have not been sterilised) will not be enrolled into the trial.
  • Renal dysfunction (eGFR ≤30 mL/min/1.73m2)
  • NYHA Class IV heart failure
  • Patients with atrial fibrillation and poor rate control.
  • Contraindications to MR
  • Previous history of contrast allergy of adverse reactions (gadolinium)
  • Contraindications to tafamidis therapy

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

University Medical Centre Groningen

Groningen, 9713 GZ, Netherlands

RECRUITING

Related Publications (1)

  • Tubben A, Prakken NHJ, Ivashchenko OV, Tingen HSA, Glaudemans AWJM, Noordzij W, Nienhuis HLA, van der Meer P, Slart RHJA. Feasibility of the absolute quantification and left ventricular segmentation of cardiac sympathetic innervation in wild-type transthyretin amyloidosis cardiomyopathy with [123I]-MIBG SPECT/CT: The I-NERVE study. J Nucl Cardiol. 2025 Mar;45:102146. doi: 10.1016/j.nuclcard.2025.102146. Epub 2025 Feb 3.

MeSH Terms

Conditions

AmyloidosisHeart Failure

Condition Hierarchy (Ancestors)

Proteostasis DeficienciesMetabolic DiseasesNutritional and Metabolic DiseasesHeart DiseasesCardiovascular Diseases

Study Officials

  • Marc Dweck, MD PhD

    Centre of Cardiovascular Science

    PRINCIPAL INVESTIGATOR
  • Fabien Siepen, MD PhD

    Heidelberg University

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Riemer Slart, MD PhD

CONTACT

Study Design

Study Type
observational
Observational Model
CASE CONTROL
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

January 26, 2023

First Posted

March 20, 2023

Study Start

August 25, 2021

Primary Completion (Estimated)

September 30, 2026

Study Completion (Estimated)

September 30, 2026

Last Updated

June 27, 2025

Record last verified: 2025-06

Data Sharing

IPD Sharing
Will share

At the time of publication of the results in a peer-reviewed manuscript, the minimal data set underlying the findings will be made publicly available, either as part of the submission or through a stable, public repository such as EASY (DANS), DataverseNL or Zenodo. The "minimal data set" consists of the data set used to reach the conclusions drawn in the manuscript with related metadata and methods, and any additional data required to replicate the reported study findings in their entirety, including the values behind the means, standard deviations, and other measures reported, the values used to build graphs, and the points extracted from images for analysis. To obtain access to the full data set, a research proposal and analysis plan has to be submitted.

Locations