Project Streams
The overarching aim of the BORNTOGETTHERE program is to exploit current evidence on early detection, characterization and intervention for infants at high risk of Cerebral Palsy (CP).
Improve health programs for the early detection (ED) of CP, in a context-specific way, reducing age at diagnosis and age at referral to CP-specific early intervention programs.
Improve health programs for the early surveillance (ES) of associated impairments and functional limitations in infants with CP and mental health of their parents, in a context specific way, thereby fostering individualized early intervention delivery and prevention of secondary complications (e.g. hip dislocation) for infants, and provision of support for their parents.
Improve health programs of early intervention (EI) in infants with CP, in a context-specific way, thereby improving the outcomes of the infants (motor, cognitive and social-emotional development) and of their caregivers (mental health).
Early Detection
BORNTOGETTHERE is the first International Consortium to undertake Knowledge Translation and the simultaneous implementation of the first International Evidence-based guidelines of the early diagnosis and management of infants with Cerebral Palsy (REF or link to JAMA article).
The BORNTOGETTHERE efforts will ensure the most appropriate support for infants at risk of Cerebral Palsy and their families in the participating countries, and significantly contribute to the dissemination of the guidelines, thereby closing the gap between evidence and clinical practice delivery.
The Guidelines state strong recommendations for a major change in standard diagnostic practice with infants at risk, to improve health programs for the early detection (ED) of CP in a context-specific way, and to reduce the age at diagnosis and age at referral to early intervention programs.
Early Surveillance
Comprehensive follow-up of infant development and family wellbeing is essential to monitor patients at high risk of CP.
Through healthcare practitioner education in key-features of the guidelines topics, BORNTOGETTHERE will improve health programs for most effective early surveillance (ES) of infants at risk.
This will include the surveillance of CO associated impairments and functional limitations in the culturally adapted yet evidence-based manner in each participating country.
This will foster access to infant access to early intervention delivery and prevention of secondary complications for infants, and provision of support for their parents.
Early Intervention
Clinically indicated high risk for Cerebral palsy should always be followed by the referral of the infant to individualised Early Intervention services and support services for the family.
These evidence-based services, provided in a systematic family-needs based manner are essential to infant development and family wellbeing.
Through healthcare practitioner education in key-features of the best available evidence, BORNTOGETTHERE will improve health programs for the most effective early intervention (EI) for infants at high risk and with a diagnosis of CP.
Thereby, infants will receive a better chance in the early months to make strides in the motor, cognitive and social-emotional development.
The Visual Function Classification System
for children with Cerebral Palsy (VFCS)
The VFCS takes into account the levels of activity and participation as described in the International Classification of Functioning, Disability and Health (ICF) developed by the World Health Organization (WHO).The importance of a visual functioning classification system for children with CP lies in the fact that children with CP often have vision disfunction. It that can be either due to the brain injury or injury of the eye structures (for example: retinopathy of prematurity, cataracts)
The goal of the group that developed the VFCS was to include vision with the existing classifications of abilities for individuals with CP (Gross Motor GMFCS, Manual ability MACS, Communication CFCS, and Eating and drinking EDACS).
The VFCS has currently been translated from English into 16 languages and many other versions are being translated