An innovative study, conducted by the National School of Public Health at NOVA University of Lisbon (NOVA NSPH), aims to assess the needs and quality of life of people with paramyloidosis, a disease with a high incidence in Portugal. Entitled ‘Needs and QuaLity of Life AssessmeNT of PEople with Amyloidosis: a Real-World Study iN Portugal – LANTERN’, the study, in partnership with the Portuguese Paramyloidosis Association, the Portuguese Society for the Study of Neuromuscular Diseases and AstraZeneca, will be open for participation throughout the country until 30 September this year.
Paramyloidosis is a rare and debilitating disease characterised by the extracellular deposition of amyloid proteins in various tissues and organs, resulting in progressive organ dysfunction.
Portugal has the highest prevalence of the disease with around 20 per cent of all patients worldwide.
The quality of life of people with paramyloidosis is substantially compromised due to the progression of clinical symptoms, which include peripheral neuropathy, cardiomyopathy, gastrointestinal dysfunction and impaired ambulatory capacity. These symptoms not only affect patients’ physical health, but also have a profound impact on mental health and social well-being, resulting in a significant loss of autonomy and the need for ongoing care, which imposes a considerable burden on both patients and their carers.
The LANTERN Study aims to identify the main needs of people with paramyloidosis and the determinants that influence their quality of life. The results of this study could be important for public health in Portugal, as they will provide current and relevant data for the development of more effective and personalised intervention strategies, as well as recommendations for health policies and clinical practices that can mitigate the negative impacts of the disease.
In Portugal, hereditary transthyretin amyloidosis (ATTRv), also known as familial amyloidotic polyneuropathy (FAP), paramyloidosis or ‘little feet disease’ has a significant prevalence, with a high incidence of cases compared to other European countries.
About the LANTERN Study
The LANTERN Study, which began in June 2025, is being conducted by the National School of Public Health at NOVA University of Lisbon, in partnership with the Portuguese Paramyloidosis Association, the Portuguese Society for the Study of Neuromuscular Diseases and AstraZeneca, to identify the needs and determinants that influence the quality of life of people living with paramyloidosis in Portugal. The study’s conditions of participation are available on the NOVA NSPH website.
