Healthcare European Amyloidosis Registry

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to collect data on patients with confirmed or suspected cardiac amyloidosis without interfering with their management. It includes three cohorts: a retrospective cohort of deceased patients, a retro-prospective cohort of patients already diagnosed, and a prospective cohort of patients referred for suspected amyloidosis. The study will gather information related to patient management throughout their follow-up, allowing for a comprehensive understanding of the disease's impact and progression.

Why it matters

Who can join: the full rules

INCLUSION CRITERIA

1. Patients must meet all of the following inclusion criteria to be included in the study:

   * Major patient
   * Protected adult patient (guardianship or curatorship)
2. 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
3. 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
4. Retrospective cohort:

Deceased patients followed in the center with a confirmed diagnosis of amyloidosis

Study participants will not be compensated for their participation

EXCLUSION CRITERIA The patient has expressed his/her refusal to participate Participation in another study, even an interventional one, is not a criterion for non-inclusion.

Where it's running

• Hôpital Henri Mondor
  Créteil, France Recruiting

Study contacts

• Principal investigator: Thibaud Pr Damy — Henri Mondor University Hospital
• Study coordinator: Mounira Kharoubi
• Email: mounira.kharoubi@gmail.com
• Phone: +33650029257

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Liver and Coagulation Markers in ATTR Cardiac Amyloidosis

  This study tests liver function and blood-clotting markers in people with ATTR-CA to see if they reflect disease severity and progression.

  Recruiting University of Messina · Messina, Sicily · NCT07766135

• Cardiac Amyloidosis: See if Intracardiac Thrombi are Common on CT

  This study tests whether a contrast-enhanced cardiac CT can reliably detect intracardiac thrombi in adults with cardiac amyloidosis.

  Recruiting Centre Hospitalier Universitaire Dijon · Dijon · NCT07648303

• Higher pacemaker rate for people with cardiac amyloidosis

  This study will see if temporarily increasing the pacemaker rate improves heart-failure symptoms and exercise tolerance in adults with cardiac amyloidosis who already have pacemakers.

  Recruiting University of Minnesota · Minneapolis, Minnesota · NCT07583823

• Using [64Cu]FBP8 PET/MR to find intracardiac blood clots in cardiac amyloidosis

  We'll test whether a [64Cu]FBP8 PET/MR scan can find blood clots inside the heart of people with cardiac amyloidosis who have atrial fibrillation or atrial flutter.

  Recruiting Phase 3 Brigham and Women's Hospital · Boston, Massachusetts · NCT07560306

• Chest pain screening for hidden cardiac amyloidosis

  We will test whether men over 65 who have chest pain but no coronary artery disease might have hidden cardiac amyloidosis using blood and urine tests, ECG and echocardiography, bone scintigraphy, and sometimes a heart biopsy.

  Recruiting Copenhagen University Hospital, Rigshospitalet · Copenhagen · NCT07435168

• Using advanced heart MRI to improve diagnosis and risk prediction for rare cardiomyopathies

  This project tests whether advanced cardiac MRI techniques can help diagnose and predict future risk for people with rare heart muscle diseases like Danon, Fabry, cardiac amyloidosis, Noonan syndrome, and cardiac sarcoidosis.

  Recruiting Chinese Academy of Medical Sciences, Fuwai Hospital · Beijing · NCT07336394

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.