The ninth annual meeting of the Cerebral Palsy Research Network brought together researchers, clinicians, healthcare professionals, industry and nonprofit partners, and community members for two days of collaboration focused on improving the lifelong health and wellbeing of people with cerebral palsy (CP). Hosted by Johns Hopkins Medicine, Kennedy Krieger Institute, and Mt. Washington Pediatric Hospital, the 2026 meeting embraced the theme “Stories That Drive Science.”
The theme reflected CP Research Network’s ongoing commitment to research that is shaped not only by scientific expertise, but also by the lived experiences of people with CP and their families. The Network’s learning health system model connects research directly to community priorities and clinical care improvement.
As a virtual organization, the CP Research Network’s annual research meeting provides a valuable opportunity to connect in person that strengthens relationships, accelerates collaboration, and generates new ideas for future studies and partnerships.
Examples of topics and key areas of focus
The meeting featured presentations, posters, and discussions on a wide range of topics impacting people with CP throughout adulthood and childhood, including:
- Adulthood and aging with CP
- Early Detection of CP
- Pain, nutrition, mental health, and sleep
- Kidney disease and overall medical health
- Dystonia assessment and treatment
- Surgical interventions for spasticity, bony deformity and muscle lengthening
- Improving access to local physical activity resources.
In addition to individual research projects, the Network focused on strengthening the systems that support high-quality, community-driven research.
Key areas of focus for supporting ongoing research, healthcare delivery and improving the quality of our data collection:
- Improving collection of meaningful outcome measures identified by the CP community
- Advancing projects focused on adult healthcare delivery in CP
- Shared decision-making for surgical interventions
- Providing education on grant preparation and funding readiness
- Strengthening the quality and consistency of clinical data collected during healthcare visits.
Community partnership at the center of our work
One of the most impactful parts of the meeting focused on community partnership in research.
A panel of community co-investigators — individuals with CP and family members directly involved in the research process — shared how their participation improves the quality, relevance, and real-world impact of studies conducted within the CP Research Network.
The discussion reinforced that meaningful collaboration is more than asking for feedback after a study has already been designed. It means building research together from the beginning to end.
Panelists emphasized the importance of creating environments where people with CP and families are valued not only as study participants, but also as contributors, advisors, and leaders within the scientific process.
Dr. Ingo Helbig delivered an impressive keynote about his work finding unique clinical characteristics found in rare genetic epilepsies.
The keynote: Patient Narratives from the Electronic Medical Record
A keynote presentation by pediatric neurologist Dr. Ingo Helbig from the Children’s Hospital of Philadelphia covered how clinical notes from electronic medical records, genetics, and artificial intelligence can identify rare genetic disorders and improve patient care. His success using electronic medical record data and AI to answer important questions in epilepsy research offered an exciting example of how similar approaches may help advance understanding and treatment of cerebral palsy in the future.
Building Momentum for the Future
The meeting also created important opportunities for mentorship and professional growth. Early-career investigators and trainees participated alongside experienced researchers and clinicians, helping build the next generation of leaders in CP research.
Most importantly, community members continued to remind everyone why this work matters. Their stories and lived experiences grounded discussions in the realities of everyday life with CP and reinforced the importance of keeping research connected to real-world needs.
Perhaps the most encouraging takeaway from the meeting was the sense of momentum. What began years ago as a small collaborative effort has grown into a national network committed to improving care across the lifespan for people with cerebral palsy.
As research priorities continue expanding beyond childhood care alone, collaboration across institutions and disciplines becomes increasingly important. The 2026 CP Research Network meeting highlighted how the Network continues to create opportunities for healthcare systems, researchers, clinicians, industry and nonprofit partners and community members to contribute to meaningful multicenter studies while benefiting from shared expertise, infrastructure, and collaborations.
