Actively Recruiting
Essen Amyloidosis Registry
Led by University Hospital, Essen · Updated on 2025-08-21
400
Participants Needed
1
Research Sites
25 weeks
Total Duration
On this page
AI-Summary
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.
CONDITIONS
Brief Title
Essen Amyloidosis Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Suspected or confirmed amyloidosis (any type)
- Written informed consent to participate in the study
- Age 18 years or older
You will not qualify if you...
- Under 18 years of age
- No written informed consent provided
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 1 month
Participants undergo clinical, laboratory, and imaging assessments to confirm amyloidosis diagnosis and evaluate disease characteristics.
1 to 2 visits depending on diagnostic needs
Duration - Up to 6 years
Participants are followed with routine clinical evaluations every 3 to 6 months, including blood tests, ECGs, imaging studies, and device checks as needed, to monitor disease progression and treatment outcomes.
Regular visits every 3 to 6 months
Trial Site Locations
Total: 1 location
1
University Hospital Essen
Essen, North Rhine-Westphalia, Germany, 45147
Actively Recruiting
Research Team
L
Lars Michel, MD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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