Registry following people with suspected or confirmed cardiac amyloidosis
Collects data on patients with heart amyloidosis during their routine care.
Plain-language title generated from the registry record
Registry title: Registre HEAR, Healthcare European Amyloidosis Registry
Key facts
- Where
- Créteil, FranceSee the site
Where in France
- Hopital Henri MondorCréteil, FranceTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Saving Lives Matters
- Trial code
- NCT05101304
- Record updated
- 1 November 2021
- Original description
This is a non-interventional, prospective, retrospective, non-comparative, multi-center study.Read full original descriptionShow less
Registre HEAR, Healthcare European Amyloidosis Registry
This is a non-interventional, prospective, retrospective, non-comparative, multi-center study.
In order not to interfere with patient management, the study is observational. Thus, no follow-up visit is imposed. The data collection will be limited to the data related to the management of the patients included throughout their follow-up.
This study is intended for all patients with a confirmed or suspected diagnosis of cardiac amyloidosis. Three cohorts will be identified: the HEAR (Healthcare European Amyloidosis Registry)-Retrospective Cohort, the HEAR(Healthcare European Amyloidosis Registry)-Retrospective-Prospective Cohort and the HEAR (Healthcare European Amyloidosis Registry)-Prospective Cohort.
Inclusion: Patients must meet all of the following inclusion criteria to be included in the study:; Major patient; Protected adult patient (guardianship or curatorship); Prospective Cohort:; Patients referred or who have been referred to the participating centre for suspected amyloidosis; Patient who signed the patient information "Prospective Cohort" note; Retro-prospective Cohort:; Patient already followed in the center with a confirmed diagnosis of amyloidosis Patient who signed the "retro-prospective cohort" patient information note; Retrospective cohort:; Deceased patients followed in the center with a confirmed diagnosis of amyloidosis; Study participants will not be compensated for their participation.