Registry for patients with systemic amyloidosis

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

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.

Why it matters

Who can join: the full rules

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 it's running

• 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

Similar studies

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

• Belgian Amyloidosis Biobank and Patient Registry at UZ Leuven

  This project collects and stores blood, tissue samples, and medical data from adults with suspected or confirmed amyloidosis to create a biobank and registry for future research.

  Recruiting at 2 sites Universitaire Ziekenhuizen KU Leuven · Leuven and 1 other locations · NCT07172243

• Evaluation of heart health in patients with ATTR amyloidosis on tafamidis treatment

  This study looks at how tafamidis treatment affects heart health in patients with ATTR amyloidosis by checking their heart rhythm and other health needs every six months.

  Recruiting Fondazione IRCCS Policlinico San Matteo di Pavia · Pavia · NCT06251778

• Optimizing first-line treatment for AL amyloidosis with specific genetic markers

  This study is testing a new treatment plan for people with AL amyloidosis who have a specific genetic marker to see if it helps them respond better and faster to their first-line therapy.

  Recruiting at 7 sites Peking University People's Hospital · Beijing, Beijing Municipality and 6 other locations · NCT06192979

• Detecting cardiac amyloidosis in people with severe aortic valve narrowing

  This study tests non-invasively whether imaging tests can find heart amyloidosis in patients with severe aortic stenosis who are being evaluated for valve replacement.

  Recruiting University Hospital Tuebingen · Tübingen · NCT07752732

• Acoramidis for ATTR-CM: Cardiac Imaging Study

  This study tests whether acoramidis can improve heart structure and function in people with transthyretin amyloid cardiomyopathy.

  Recruiting Phase 4 Eidos Therapeutics, a BridgeBio company · St Louis, Missouri · NCT07695701

• Heart-Healthy Rehab for Cardiac Amyloidosis

  This study tests whether a 5-week supervised cardiac rehabilitation program can help people with cardiac amyloidosis improve exercise capacity and quality of life.

  Recruiting University Hospital, Montpellier · Montpellier · NCT07494942

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.