New study 2020

Long-term effects of the treatment of acute lymphoblastic leukemia in paediatric patients

Motivation

With current treatments, the survival rate of children with acute paediatric leukaemia (ALL) is now 85%. Despite this good prognosis, the long-term side effects of treatments can affect the future quality of life of these patients.

Objectives

Identify and analyze the side effects of treatment 3 years after remission of ALL, taking into account the perspective of patients with pediatric disease onset (or that of their caregivers) as a source of information.

Method

A clinical and psychosocial study that will use the information provided directly by patients and their caregivers through the use of a validated ALAN scale (Acute Leukaemia Advocates Network) to report quality of life data. This pilot will be carried out in collaboration with the CLOSER project (GA 825749) and will also collect information from patients in Argentina, Chile and Uruguay.

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The talk inside Share4Rare
Íngrid is a 12 year-old girl from Vilanova i la Geltrú (Barcelona) and when she was 10 she was diagnosed with acute lymphoblastic leukemia

"Share4Rare will help us meet other families with similar conditions to that of our daughter and keep up to date with the latest treatments"

Íngrid was diagnosed with LLA when she was 10