Phenotypic Manifestations of Hereditary ATTR Amyloidosis

NCT ID: NCT07124377

Last Updated: 2025-08-15

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

ENROLLING_BY_INVITATION

Total Enrollment

57 participants

Study Classification

OBSERVATIONAL

Study Start Date

2024-09-01

Study Completion Date

2026-03-01

Brief Summary

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This study focuses on hereditary transthyretin amyloidosis (ATTRv) with the Val50Met variant in a non endemic aerea

Detailed Description

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We aim to describe the phenotypic variables including preclinical, cardiological, neurological, and mixed manifestations in patients carrying the Val50Met variant. Our goal is to identify early disease onset criteria in initially asymptomatic patients, enhancing early detection and treatment strategies. Participants will undergo various clinical examinations and tests to gather comprehensive data.

Conditions

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Hereditary Amyloidosis, Transthyretin-Related

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Carriers of the Val50Met variant

Patients with positive genetic test for patogenic variant of the TTR gene

A complete physical examination of all body systems, including height and body weight

Intervention Type OTHER

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Neurological examination includes motor strength testing; sensory testing with pinprick, light touch, temperature, and proprioception; deep tendon reflexes; and gait assessment.

Intervention Type OTHER

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Electrocardiogram (12-lead ECG)

Intervention Type DIAGNOSTIC_TEST

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

24-Hour Holter Monitoring

Intervention Type DIAGNOSTIC_TEST

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Color Doppler echocardiography with "two-dimensional strain" (longitudinal strain)

Intervention Type DIAGNOSTIC_TEST

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

The Norfolk Quality of Life-Diabetic Neuropathy (QOL-DN)

Intervention Type OTHER

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

questionnaire, the NIS-LL (Neuropathy Impairment Score in the Lower Limbs)

Intervention Type OTHER

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

COMPASS-31 (Composite Autonomic Symptom Score-31)

Intervention Type OTHER

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Electromyogram (EMG)

Intervention Type DIAGNOSTIC_TEST

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

[99mTc]Tc-DPD scintigraphy

Intervention Type DIAGNOSTIC_TEST

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Laboratory assessments

Intervention Type DIAGNOSTIC_TEST

Laboratory assessments include blood and urine sample collection for serum chemistry, hematology, and urinalysis, with specific biomarker analyses (troponin T, NT-proBNP, Kappa, and Lambda light chains

Interventions

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A complete physical examination of all body systems, including height and body weight

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Intervention Type OTHER

Neurological examination includes motor strength testing; sensory testing with pinprick, light touch, temperature, and proprioception; deep tendon reflexes; and gait assessment.

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Intervention Type OTHER

Electrocardiogram (12-lead ECG)

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Intervention Type DIAGNOSTIC_TEST

24-Hour Holter Monitoring

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Intervention Type DIAGNOSTIC_TEST

Color Doppler echocardiography with "two-dimensional strain" (longitudinal strain)

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Intervention Type DIAGNOSTIC_TEST

The Norfolk Quality of Life-Diabetic Neuropathy (QOL-DN)

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Intervention Type OTHER

questionnaire, the NIS-LL (Neuropathy Impairment Score in the Lower Limbs)

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Intervention Type OTHER

COMPASS-31 (Composite Autonomic Symptom Score-31)

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Intervention Type OTHER

Electromyogram (EMG)

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Intervention Type DIAGNOSTIC_TEST

[99mTc]Tc-DPD scintigraphy

These interventions will be carried out in a time-controlled population within a family cluster of VAL50MET

Intervention Type DIAGNOSTIC_TEST

Laboratory assessments

Laboratory assessments include blood and urine sample collection for serum chemistry, hematology, and urinalysis, with specific biomarker analyses (troponin T, NT-proBNP, Kappa, and Lambda light chains

Intervention Type DIAGNOSTIC_TEST

Eligibility Criteria

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Inclusion Criteria

* All subjects between 20 and 70 years of age, carriers of the Val50Met variant

Exclusion Criteria

* Patients who refuse to participate.
Minimum Eligible Age

20 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Instituto de Cardiología de Corrientes

OTHER

Sponsor Role collaborator

Hospital 9 de Julio de Las Breñas

OTHER_GOV

Sponsor Role lead

Responsible Party

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Mauricio Tomei

Principal Investigator

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Mauricio MT Tomei, MD

Role: PRINCIPAL_INVESTIGATOR

Hospital 9 de Julio de Las Breñas

Locations

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Hospital las Breñas 9 de Julio

Charata, Chaco Province, Argentina

Site Status

Countries

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Argentina

References

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Saez MS, Aguirre MA, Perez de Arenaza D, Sorroche P, Nucifora E, Posadas Martinez ML. Epidemiology of variant transthyretin amyloidosis at a reference center in Argentina. Mol Genet Genomic Med. 2021 Nov;9(11):e1812. doi: 10.1002/mgg3.1812. Epub 2021 Oct 20.

Reference Type BACKGROUND
PMID: 34668655 (View on PubMed)

Conceicao I, Damy T, Romero M, Galan L, Attarian S, Luigetti M, Sadeh M, Sarafov S, Tournev I, Ueda M. Early diagnosis of ATTR amyloidosis through targeted follow-up of identified carriers of TTR gene mutations. Amyloid. 2019 Mar;26(1):3-9. doi: 10.1080/13506129.2018.1556156. Epub 2019 Feb 22.

Reference Type BACKGROUND
PMID: 30793974 (View on PubMed)

Maurer MS, Bokhari S, Damy T, Dorbala S, Drachman BM, Fontana M, Grogan M, Kristen AV, Lousada I, Nativi-Nicolau J, Cristina Quarta C, Rapezzi C, Ruberg FL, Witteles R, Merlini G. Expert Consensus Recommendations for the Suspicion and Diagnosis of Transthyretin Cardiac Amyloidosis. Circ Heart Fail. 2019 Sep;12(9):e006075. doi: 10.1161/CIRCHEARTFAILURE.119.006075. Epub 2019 Sep 4.

Reference Type BACKGROUND
PMID: 31480867 (View on PubMed)

Gentile L, Coelho T, Dispenzieri A, Conceicao I, Waddington-Cruz M, Kristen A, Wixner J, Diemberger I, Gonzalez-Moreno J, Cariou E, Maurer MS, Plante-Bordeneuve V, Garcia-Pavia P, Tournev I, Gonzalez-Costello J, Duarte AG, Grogan M, Mazzeo A, Chapman D, Gupta P, Glass O, Amass L; THAOS investigators. A 15-year consolidated overview of data in over 6000 patients from the Transthyretin Amyloidosis Outcomes Survey (THAOS). Orphanet J Rare Dis. 2023 Nov 10;18(1):350. doi: 10.1186/s13023-023-02962-5.

Reference Type BACKGROUND
PMID: 37946256 (View on PubMed)

Other Identifiers

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hATTR Chaco Cluster

Identifier Type: -

Identifier Source: org_study_id

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