management and care of children and adolescents with Spinal Cord Injury.
The PEPSCI collaboration’s mission is to improve the overall
management of a rare condition: spinal cord injury in children and
adolescents. This collaboration aims to:
•
Standardize acute management, rehabilitation and outpatient
care across Europe.
•
Improve the understanding of neurological and functional
recovery profiles.
•
Map psychosocial processes and coping after the spinal cord
injury.
•
Evaluate cross-cultural differences in physical and
psychosocial outcomes.
The collaborators are currently preparing a survey to be sent to all outpatient contacts of involved medical centres. Through
this survey children, adolescents and their parents are invited to suggest topics of research and healthcare where
researchers and clinicians should focus on. This prioritisation exercise is a crucial, yet elaborative, preparatory phase which
will help this collaboration to tackle truly relevant issues in paediatric SCI. The results of this survey will be used to select
future topics for research projects and guidelines.
The PEPSCI collaboration is currently seeking funds to employ a project coordinator who will be overseeing data collection
from participating centres across Europe.