BE.Amycon Biobank & Data Registry UZ Leuven

Universitaire Ziekenhuizen KU Leuven

Status: Not yet enrolling

Conditions: AL Amyloidosis; Amyloidosis Cardiac; Amyloidosis

Study type: Observational

Funder types: Other

Identifiers

NCT07172243

BE.AMYCON_UZL_WP2_02

Details and patient eligibility

About

The goal of this study is to collect and store human body material (HBM) of patients with amyloidosis in a biobank "BE.Amycon biobank" for future research and to collect clinical data of patients with amyloidosis in a database "BE.Amycon data registry".

Full description

With the support of VIB (Vlaams Instituut voor Biotechnologie) Grand Challenges Program, this project aims to establish the BElgian AMYloidosis CONsortium (BE.AMYCON) by joining forces of VIB researchers, a state-of-the-art diagnostic platform, and clinicians from various disciplines and different institutes. Such a consortium will address patient needs and improve outcomes on many levels.

The aim is is to establish a GDPR (General Data Protection Regulation)-proof HBM biobank in the context of amyloidosis. HBM of patients with suspected or confirmed amyloidosis will be prospectively collected and stored for future scientific research. In addition to the HBM collection, a database with personal and health data of patients diagnosed with amyloidosis (any subtype) will be established in order to get better insights on the disease presentation, disease evolution pattern, treatment plans and responses and survival.

Enrollment: 505 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

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