Belgian Amyloidosis Biobank and Patient Registry at UZ Leuven
BE.Amycon Biobank & Data Registry UZ Leuven: Human Body Material (HBM) Collection and Data Collection of Patients With Amyloidosis
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 |
|---|---|
| Enrollment | 505 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Universitaire Ziekenhuizen KU Leuven Academic / other |
| Locations | 2 sites (Leuven and 1 other locations) |
| Trial ID | NCT07172243 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
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.
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 performed: Similar disease-specific biobanks and registries have previously enabled biomarker discoveries and improved clinical knowledge, so this approach builds on established, successful models.
Eligibility criteria
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 this trial is running
Leuven and 1 other locations
- 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
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.