Essen Registry for Patients with Suspected or Confirmed Systemic Amyloidosis

What this Trial Is About

The Essen Amyloidosis Registry EAR is a prospective, observational study focused on patients with suspected or confirmed systemic amyloidosis, including cardiac amyloidosis and various subtypes such as light-chain and transthyretin amyloidosis. The registry aims to enhance understanding of disease progression, diagnostic methods, and treatment outcomes by collecting comprehensive clinical data. Hosted at the University Hospital Essen, the study follows patients longitudinally to gather real-world insights. Participants in the registry undergo standard clinical care with data collected on demographics, medical history, comorbidities, diagnostic results, treatment approaches, and follow-up information. Regular assessments include laboratory tests, cardiac and other imaging like echocardiography and MRI, functional status evaluations, and quality-of-life measures from routine practice. Biological samples are also collected for biomarker research. Follow-up visits occur every 3 to 6 months depending on disease stage and treatment, including ECGs, blood tests, imaging, and device checks for those with pacemakers or defibrillators. Throughout their participation, patients receive routine clinical evaluations and their progress is monitored for outcomes such as overall mortality or unplanned heart failure hospitalizations over 24 months. The registry supports future research through a comprehensive dataset and sub-projects approved separately. The study follows established clinical guidelines and standard procedures for amyloidosis management, aiming to improve care and understanding of this complex disease.

Essen Amyloidosis Registry