Registry for patients with systemic amyloidosis
Essen Amyloidosis Registry
This study is collecting information from patients with systemic amyloidosis to better understand the disease and how different treatments work over time.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 400 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University Hospital, Essen Academic / other |
| Locations | 1 site (Essen, North Rhine-Westphalia) |
| Trial ID | NCT06887283 on ClinicalTrials.gov |
What this trial studies
The Essen Amyloidosis Registry (EAR) is a prospective, observational registry that collects extensive clinical data from patients diagnosed with systemic amyloidosis. It aims to enhance understanding of disease progression, diagnostic pathways, and treatment outcomes by following patients longitudinally. The registry includes various forms of systemic amyloidosis, such as light-chain and transthyretin amyloidosis, and gathers data through standardized assessments, imaging, and quality-of-life evaluations. Additionally, it incorporates a biobank for biomarker analysis to improve diagnostic sensitivity and therapy monitoring.
Who should consider this trial
Good fit: Ideal candidates include adults aged 18 and older with suspected or confirmed systemic amyloidosis.
Not a fit: Patients under 18 years of age or those who cannot provide informed consent will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to improved diagnostic and treatment strategies for patients with systemic amyloidosis.
How similar studies have performed: Other observational registries have shown success in improving understanding and management of complex diseases, suggesting potential for this approach.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Suspected or confirmed amyloidosis (any) * Written informed consent to participate in the study * Age 18 years and above Exclusion Criteria: * Age \< 18 years * Lack of written informed consent
Where this trial is running
Essen, North Rhine-Westphalia
- University Hospital Essen — Essen, North Rhine-Westphalia, Germany (Recruiting)
Study contacts
- Study coordinator: Lars Michel, MD
- Email: lars.michel@uk-essen.de
- Phone: +49 201 72384841
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.