ALAN is collaborating with Share4Rare, an European project which aims to improve the quality of life of those affected by a rare disease. By working together, we can build a community to transform rare diseases into known diseases by advancing research and sharing knowledge.
New study 2020: Long-term effects of the treatment of acute lymphoblastic leukemia (ALL) in paediatric patients
With current treatments, the survival rate of children with ALL is now 85%. Despite this good prognosis, the long-term side effects of treatments can affect the future quality of life of patients.
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.
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 Leukemia 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.
Research project flyer: Acute_Lymphoblastic_Leukemia_EN_flyer
For more information about the project and how to be involved: https://www.share4rare.org/registration/acute-lymphoblastic-leukemia