NIS Amyloidosis Study RWE - EMN23/54767414AMY0001
Research type
Research Study
Full title
A Retrospective Observational Multicenter Study on the Management and Outcome of Patients with Systemic AL Amyloidosis in Europe
IRAS ID
261554
Contact name
Ashutosh Wechalekar
Contact email
Sponsor organisation
Stichting European Myeloma Network (EMN)
Duration of Study in the UK
1 years, 0 months, days
Research summary
This study aims to record data from a representative sample of patients in Europe diagnosed with AL-Amyloidosis with symptomatic organ involvement who have received at least one line of treatment.
AL-Amyloidosis is a rare acquired disorder of a specific type of immune cells called plasma cells and is characterised by the formation and deposition of abnormal proteins (amyloid). These abnormal proteins are produced by plasma cells and their tissue deposition gradually results in organ damage and subsequently organ failure.
The present study aims to define the standard of care in the treatment of patients diagnosed with AL-Amyloidosis and symptomatic organ involvement in Europe. The evidence generated from this study will serve as a compass to guide and focus on the identification of unmet medical needs for AL-Amyloidosis.
REC name
London - Central Research Ethics Committee
REC reference
19/LO/1419
Date of REC Opinion
3 Oct 2019
REC opinion
Favourable Opinion