Belgian Amyloidosis Biobank and Patient Registry at UZ Leuven
Official title: BE.Amycon Biobank & Data Registry UZ Leuven: Human Body Material (HBM) Collection and Data Collection of Patients With Amyloidosis
Run by Universitaire Ziekenhuizen KU Leuven · NCT07172243 · Data updated 2026-11-12
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.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 505 (estimated) |
| Sponsor | Universitaire Ziekenhuizen KU Leuven Academic / other |
| Locations | 2 sites (Leuven and 1 other locations) |
| Status | Recruiting |
| Started | September 24, 2025 |
| Main results expected | September 2029 |
| Study ends | January 2030 |
| Registry record updated | September 25, 2026 |
| Trial ID | NCT07172243 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Adults aged 18 or older with suspected or confirmed amyloidosis of any subtype, especially those newly diagnosed or experiencing relapse, who can give informed consent are the ideal participants.
✕Probably not a fit
People who cannot or will not provide informed consent, those without an amyloidosis diagnosis, or those expecting immediate personal treatment benefit should note this is a research biobank and may not provide direct clinical benefit.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The program will prospectively collect human body material (HBM) and linked clinical data from adults with suspected or confirmed amyloidosis to create a GDPR-compliant biobank and database. Samples and data will include newly diagnosed patients and those with relapse for the prospective collection, and will capture disease presentation, treatment plans, responses, and survival. The initiative is run by UZ Leuven in collaboration with VIB and aims to support multi-disciplinary research across participating centers. Material and data will be stored for future scientific studies to enable biomarker discovery and improved understanding of amyloidosis subtypes.
Why it matters
Potential benefit: If successful, the biobank and registry could speed discovery of better diagnostic markers and treatments and improve long-term care for people with amyloidosis.
How similar studies have gone: Similar disease-specific biobanks and registries have previously enabled biomarker discoveries and improved clinical knowledge, so this approach builds on established, successful models.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Provide consent and sign informed consent form * Age 18 years or older * Diagnosis of amyloidosis (suspected or confirmed, any subtypes) * For the prospective sample collection only: newly diagnosed (any subtype) or at relapse (AL amyloidosis) Exclusion Criteria: * Not willing to sign informed consent * Not able to sign informed consent
Where it's running
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UZ Leuven Gasthuisberg - hematology
Leuven, Belgium Recruiting -
UZ Leuven Gasthuisberg - cardiology
Leuven, Belgium Recruiting
Study contacts
- Principal investigator: Michel Delforge — UZ Leuven Gasthuisberg
- Study coordinator: Michel Delforge
- Email: michel.delforge@uzleuven.be
- Phone: +32 16 346880
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Registry for patients with systemic amyloidosis
This study is collecting information from patients with systemic amyloidosis to better understand the disease and how different treatments work over time.
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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.
-
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.
-
Testing Belantamab Mafodotin for AL Amyloidosis
This study is testing a new drug called Belantamab Mafodotin to see if it can safely help people with relapsed or hard-to-treat AL Amyloidosis feel better.
-
SMS text check-ins to track symptoms for people with plasma cell disorders
This study tests whether daily SMS symptom prompts are feasible and acceptable for adults starting treatment for multiple myeloma or AL amyloidosis.
-
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.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.