Description du projet
Un diagnostic et une intervention précoces pour la paralysie cérébrale
La paralysie cérébrale (PC) constitue un groupe de troubles posturaux et moteurs provoquant une limitation de l’activité en raison de perturbations produites chez le cerveau de l’enfant ou du fœtus. Il s’agit du handicap physique le plus courant, affectant 2,1 naissances sur 1 000. Malheureusement, elle est souvent diagnostiquée après l’âge de deux ans. Ce retard peut provoquer de graves conséquences sur le long terme pour les enfants et les parents. Ainsi, la détection et l’intervention précoces sont particulièrement importantes. Le projet BornToGetThere, financé par l’UE, vise à mettre au point des directives internationales pour la pratique clinique en Europe, dans les pays à revenu intermédiaire de la tranche inférieure (PRITI) et dans des populations isolées. Il fournira les preuves, les connaissances et les procédures optimisées nécessaires à l’identification précoce des cas à haut risque et offrira des services cliniques efficaces et ciblés pour prévenir les complications secondaires en matière de santé. Le projet BornToGetThere permettra d’adapter les programmes d’intervention précoce aux différents systèmes et environnements de sécurité sociale.
Objectif
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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RIA - Research and Innovation actionCoordinateur
56126 Pisa
Italie