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NCT Number: NCT06907836

Description of a Retrospective Cohort of Patients With Transthyretin Cardiac Amyloidosis (ATTR-CA) in Internal Medicine

In 2024, the prevalence of TTR cardiac amyloidosis is difficult to determine precisely. Indeed, the disease has long been underdiagnosed due to a lack of effective treatment and non-invasive diagnostic methods. The prevalence of ATTRwt is estimated at 155 to 191 cases per million person-years, with an incidence of 36 cases per million person-years. Both incidence and prevalence increase with age.

The most common presentation of TTR cardiac amyloidosis is heart failure with preserved ventricular ejection fraction (LVEF).

The natural history of TTR cardiac amyloidosis is progression to restrictive heart disease with all the complications described above.

The median time between diagnosis and the first cardiac symptoms was 39 months. Currently, the median survival in France is approximately 3.5 years, but survival appears to be improving, with a mortality rate of 73.5% at 30 months between 2002 and 2006, compared to 15% at 60 months between 2017 and 2022.

The number of patients diagnosed with TTR cardiac amyloidosis appears to be increasing. The overwhelming majority of available data concerns patients treated in cardiology. However, the issue of TTR cardiac amyloidosis concerns all specialists caring for patients with heart failure, particularly in internal medicine due to the high number of admissions from emergency departments, with a significant proportion of patients suffering from cardiac decompensation.

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Key information

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Service de Médecine Interne - CHU de Strasbourg - France

Strasbourg, 67091, France

Location status: Recruiting

Location contact

Clara BARHOUMI, Statistician

SUB_INVESTIGATOR

Emmanuel ANDRES, MD, PhD

CONTACT

[email protected]

33 3 88 12 71 33

Emmanuel ANDRES, MD, PhD

PRINCIPAL_INVESTIGATOR

François SEVERAC, Statistician

SUB_INVESTIGATOR

Nöel LORENZO, MD

SUB_INVESTIGATOR

Xavier JANNOT, MD

SUB_INVESTIGATOR

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Sujet majeur (≥18 ans)
  • Diagnostic d'amylose à TTR suite à une hospitalisation en médecine interne aux HUS entre 01/01/2013 au 31/12/2023.

Exclusion criteria

  • Subject (and/or their legal representative, if applicable) who has expressed their opposition to the reuse of their data for scientific research purposes.
  • Type of amyloidosis other than ATTR after review of the medical record (immunological assessment, imaging assessment, expert report).

Treatment and study plan

Primary outcomes

  1. Describe the number of cases of transthyretin (TTR) cardiac amyloidosis referred to internal medicine between 2013 and 2023.

    Time frame: Up to 10 years

Study contacts

Contact information is provided by the study sponsor or research team.

Emmanuel ANDRES, MD, PhD

CONTACT

[email protected]

33 3 88 12 71 33

Sponsors and collaborators

Lead sponsor

University Hospital, Strasbourg, France

Other

Registry information

Acronym: ATTR-CA

Important dates

Study start
2024
Primary completion
2025
Study completion
2025
First posted
Apr 2, 2025
Registry last updated
Apr 2, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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