Project description
Early diagnosis and intervention of celebral palsy
Cerebral palsy (CP) is a group of movement and posture disorders causing activity limitation due to disturbances that occurred in the fetal or infant brain. It is the most common physical disability occurring in 2.1 per 1 000 births. Unfortunately, it is also often diagnosed after the age of two. This delay can cause dramatic long-term consequences for children and parents. Hence, early detection (ED) and intervention (EI) are especially important. The EU-funded BornToGetThere project aims to develop the International Clinical Practice Guideline in Europe, LMIC and remote populations. It will provide the evidence, knowledge and optimised procedures for early high-risk cases identification and offer targeted, effective clinical services to prevent secondary health complications. The BornToGetThere project will help to adapt EI programs to different welfare systems and environments.
Objective
Despite advances in the medical management of high-risk pregnancies and deliveries, cerebral palsy (CP) remains the most common physical disability in childhood in high and low-to-middle income (LMIC). In addition, caregivers of children with CP are at higher risk of psychiatric issues, further increasing health and socio-economic burden to the families. In spite of the scientific advancements in early detection and intervention (EI) in CP, there is a lack of implementation into clinical service delivery. The overarching aim of the BORNTOGETTHERE program is to exploit current evidence on early detection and efficacy of EI for infants at high risk of CP by implementing the International Clinical Practice Guideline in Europe (Italy, Denmark, Netherlands), LMIC (Georgia, Sri Lanka) and hard to reach populations (Remote Queensland and Western Australia). It will provide a multifaceted knowledge translation approach focused on i) optimizing context-specific health programs for early detection of CP, thus reducing age at diagnosis and age at referral to EI; ii) optimizing early functional characterization of infants with CP, thereby fostering personalized EI and preventing secondary complications (i.e. hip dislocation) and iii) testing the implementation of integrated EI programs adapted to country-specific welfare systems. The protocol of service delivery will result from the adaptation of early detection and EI programs based on the proven, effective intervention strategies, and those that are included into ongoing research based on effectiveness shown with preliminary data. This framework will be validated in real life varying world conditions through a large implementation program and a multicentre parallel controlled trial. The main beneficiaries will include a wide range of stakeholders: not only concerned families and communities but also policy makers, public authorities, the media, and citizen groups to ensure the translation of evidence into routine practice.
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Funding Scheme
RIA - Research and Innovation actionCoordinator
56126 Pisa
Italy