Periodic Reporting for period 4 - BornToGetThere (Implementation of early detection and early intervention service delivery in infants at risk for cerebral palsy to promote infants’ psychomotor development and maternal health)
Reporting period: 2024-01-01 to 2024-12-31
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 countries (LMIC). Additionally, caregivers of children with CP are at higher risk of psychiatric issues, further increasing the health and socio-economic burden on families. Despite scientific advancements in early detection and intervention (EI) for CP, clinical service delivery remains inadequate.
BORNTOGETTHERE provides a multifaceted knowledge translation approach focused on:
i) optimizing context-specific health programs for early detection of CP to reduce age at diagnosis and referral to EI;
ii) optimizing early functional characterization of infants with CP to foster personalized EI and prevent secondary complications (e.g. hip dislocation); and
iii) testing the implementation of integrated EI programs adapted to country-specific welfare systems.
The service delivery protocol adapts early detection and EI programs based on proven, effective intervention strategies and those being researched with promising preliminary data. This framework is validated under real-world conditions through a large implementation program and a multicenter parallel controlled trial. Beneficiaries include families, communities, policymakers, public authorities, media, and citizen groups, ensuring evidence translation into routine practice.
The overarching aim of BORNTOGETTHERE is to exploit current evidence on early detection, characterization, and intervention for infants at high risk of CP by implementing the first International Clinical Practice Guideline in multiple sites across Europe (Italy, Denmark, Netherlands), LMICs (Georgia, Sri Lanka), and hard-to-reach populations (Remote Queensland, QLD).
We aim to improve maternal and infant health through three objectives:
**Aim 1:** Improve health programs for early detection (ED) of CP in a context-specific way, reducing the age at diagnosis and referral to CP-specific EI programs.
**Aim 2:** Enhance health programs for early surveillance (ES) of associated impairments in infants with CP and parental mental health, fostering individualized EI delivery, preventing secondary complications (e.g. hip dislocation), and supporting parents.
**Aim 3:** Improve health programs for early intervention (EI) in infants with CP, enhancing infant outcomes (motor, cognitive, social-emotional development) and caregiver mental health.
During the final reporting period, these aims remained stable, and Consortium actions continued toward achieving these goals.
The Borntogetthere Model demonstrates significant strengths in diagnostic accuracy, resource efficiency, and caregiver support, creating a robust framework for early detection and intervention in infants at risk of CP. Strong interconnections between service providers, patients, caregivers, and health systems ensure data-driven insights at one level generate positive impacts across the care continuum.
However, implementation revealed challenges for future scalability. Effective deployment requires continuous data collection and a comprehensive analysis infrastructure, demanding substantial resources. Additionally, ensuring uniform policy implementation across sites necessitates addressing disparities in data access and technical expertise.
The project developed a multi-language e-learning platform that will remain available for research projects further implementing clinical practice guidelines on early detection and intervention in CP (e.g. the ENSEMBLE Project).
BORNTOGETTHERE provides a multifaceted knowledge translation approach focused on:
i) optimizing context-specific health programs for early detection of CP to reduce age at diagnosis and referral to EI;
ii) optimizing early functional characterization of infants with CP to foster personalized EI and prevent secondary complications (e.g. hip dislocation); and
iii) testing the implementation of integrated EI programs adapted to country-specific welfare systems.
The service delivery protocol adapts early detection and EI programs based on proven, effective intervention strategies and those being researched with promising preliminary data. This framework is validated under real-world conditions through a large implementation program and a multicenter parallel controlled trial. Beneficiaries include families, communities, policymakers, public authorities, media, and citizen groups, ensuring evidence translation into routine practice.
The overarching aim of BORNTOGETTHERE is to exploit current evidence on early detection, characterization, and intervention for infants at high risk of CP by implementing the first International Clinical Practice Guideline in multiple sites across Europe (Italy, Denmark, Netherlands), LMICs (Georgia, Sri Lanka), and hard-to-reach populations (Remote Queensland, QLD).
We aim to improve maternal and infant health through three objectives:
**Aim 1:** Improve health programs for early detection (ED) of CP in a context-specific way, reducing the age at diagnosis and referral to CP-specific EI programs.
**Aim 2:** Enhance health programs for early surveillance (ES) of associated impairments in infants with CP and parental mental health, fostering individualized EI delivery, preventing secondary complications (e.g. hip dislocation), and supporting parents.
**Aim 3:** Improve health programs for early intervention (EI) in infants with CP, enhancing infant outcomes (motor, cognitive, social-emotional development) and caregiver mental health.
During the final reporting period, these aims remained stable, and Consortium actions continued toward achieving these goals.
The Borntogetthere Model demonstrates significant strengths in diagnostic accuracy, resource efficiency, and caregiver support, creating a robust framework for early detection and intervention in infants at risk of CP. Strong interconnections between service providers, patients, caregivers, and health systems ensure data-driven insights at one level generate positive impacts across the care continuum.
However, implementation revealed challenges for future scalability. Effective deployment requires continuous data collection and a comprehensive analysis infrastructure, demanding substantial resources. Additionally, ensuring uniform policy implementation across sites necessitates addressing disparities in data access and technical expertise.
The project developed a multi-language e-learning platform that will remain available for research projects further implementing clinical practice guidelines on early detection and intervention in CP (e.g. the ENSEMBLE Project).
The BORNTOGETTHERE project has made significant strides in advancing early detection and intervention for cerebral palsy (CP). Throughout the final reporting period, efforts focused on family follow-ups, continued recruitment for the LEAP-CP intervention, and rigorous data management. Dissemination has been highly successful, reaching national and international professional organizations, including policymakers. Project guidelines for early detection, surveillance, and intervention have been updated or newly created in partner locations, leading to the initiation, enhancement, and expansion of services. Over 300 healthcare professionals have completed specialized training for the implementation of CP international guidelines, while the e-learning platform—available in five languages, including Ukrainian—is accessible to any interested individuals. The project successfully recruited 566 out of 500 planned families for the early surveillance study, and recruitment continued for intervention studies in Georgia, Queensland, and Sri Lanka. A major milestone was the final project conference in November 2024 in Tbilisi, Georgia, bringing together community members, healthcare professionals, policymakers, and government representatives to discuss outcomes and strategies for sustaining evidence-based programs in routine clinical practice. Despite advances in medical management, CP remains the most common childhood physical disability globally, placing significant socio-economic burdens on families. BORNTOGETTHERE addressed these challenges through a multifaceted knowledge translation approach, optimizing early detection programs, enhancing functional characterization of infants, and implementing country-specific intervention strategies. The project’s large-scale implementation and controlled trials validated its framework under diverse real-world conditions. With its conclusion, BORNTOGETTHERE has laid the foundation for sustained improvements in healthcare delivery and policy development across both high- and low-to-middle-income countries.
The BORNTOGETTHERE project has progressed beyond the state of the art by driving systemic impact, influencing policy, and integrating evidence-based early detection and intervention guidelines for cerebral palsy (CP) into healthcare systems across multiple countries. Through active engagement with policymakers, national health authorities, and international organizations, the project has contributed to the revision and publication of national CP guidelines in Georgia and Italy, while also informing neonatal follow-up protocols in the Netherlands and Denmark. Standardized implementation of early screening tools, such as the General Movement Assessment (GMA) and Hammersmith Infant Neurological Examination (HINE), has improved early diagnosis and intervention, reducing the age at which high-risk infants are identified and referred for care. Over 300 healthcare professionals have received specialized training, and interest in implementing these approaches continues to grow internationally. The final stakeholder event in Tbilisi, Georgia, brought together policymakers, healthcare providers, and researchers to discuss project outcomes, ensuring that its impact extends beyond the funding period. The sustainability of these advancements is reinforced by the integration of CP screening and follow-up programs into clinical standards, continued professional training, and the involvement of global networks such as CP360 and the European Academy of Childhood Disability. By bridging the gap between research and practice, BORNTOGETTHERE has set a foundation for lasting improvements in early detection, intervention, and healthcare policy, benefiting both high- and low-to-middle-income countries.