New study 2020

A better understanding of Paediatric Rare Tumours

Motivation

Childhood cancers are considered ultra-rare conditions due to their low frequency and the often unknown cause of the disease. More research is needed, in order to improve disease management and the quality of life of these patients.

Objectives

Enrol patients affected by these rare tumours into Share4Rare, to gain a better understanding of the disease and to allow clinicians to analyse the information and develop future treatments.

Method

A clinical and psychosocial study that will use the information provided directly by patients and their caregivers to collect data about the course of the disease and  treatments, as well as using validated scales to report on their quality of life.

Research is the heart of Share4Rare. By working together we can help to advance the research efforts in rare diseases. That's why we need you: join the community and participate in research!

Step 1

Join Share4Rare!

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