This past year saw incredible growth across the network as the seeds sown in prior years began to blossom. Our community priorities in research established in years past have led to new information and understanding as well as new screening protocols in the areas of adult pain, functional decline and dystonia. We established the need for preliminary data and long-term outcomes to answer critical questions for people with cerebral palsy as they age, and as we approach our ten-year anniversary, we will begin to see some of this information emerging for analysis.

This year has culminated in numerous “blossoms” including:

1. Facilitating the creation of community research priorities for adults with CP
2. Receiving funding for important registry extensions to capture additional information about our community including neonatal brain injury data and adding imaging support to our registry
3. Renewing and expanding our emphasis on community engagement in research
4. The implementation of dystonia screening protocols in clinical documentation and
5. The development of our new Dystonia in CP Toolkit and community education video
6. Five new publications
7. Four new sites joining the network!

Our focus on adults is unparalleled with a dedicated group of clinician researchers from Colorado, Columbia, Hartford, Michigan, and Nationwide Children’s hospitals working closely with a group adults with cerebral palsy to standardize the assessment and classification of pain which are critical steps to identifying targeted treatments and better outcomes for our community members. This study is funded by Cerebral Palsy Alliance Research Foundation — our strategic partner in research. This work is complemented by the largest study of adult wellbeing and pain, which is hosted in our MyCP Community Registry where community members self-report their experiences. Through these efforts community members and clinicians have collaborated to target studies of not only pain classification but also zeroing in on low back pain and functional decline.

These efforts have supported the careers of two young investigators who are dedicating their research efforts to the health and wellbeing of adults. Recently, one of these investigators, Dr. Cristina Sarmiento, led the co-development of a prioritized research agenda for adults with CP. Together with our registries which are the largest in the world cataloging the health of adults with CP, we are poised to improve the lives of adults with CP in ways that they have shared matter most to them. And beyond our research, our partnership with the National Center Health, Physical Activity and Disability has led more than 60 adults with CP to their Mindfulness, Exercise and Nutrition online (MENTOR) course.

The seeds of change for dystonia in CP were planted when a parent advisor sparked our effort to set a patient-centered research agenda in dystonia. Targeting some of the top 10 priorities that emerged from that agenda we have made the following progress this year:

1. Much improvement in dystonia screening from our multi-center dystonia diagnosis improvement efforts (publication pending)
2. The development of a trial for dystonia treatment (see preliminary data publication)
3. Our recently released Dystonia in CP Toolkit and dystonia video for helping families, people with dystonia in CP and clinicians understand the community experience of DCP.

Our registries, with more than 12,000 patients from 22 of our sites, are like the soil for planting seeds – the fertile ground that supports the development of studies and answering important questions about CP. They are also a tremendous resource for the advancement of careers for young investigators for whom existing data sets represents low hanging fruit for analysis and first authorship – key early ingredients to a successful career in research.

Some of the blossoms we are nurturing from the registry include:

• The relationship between etiology of CP and functional outcomes
• Practice variation in selective dorsal rhizotomy
• Rhizotomy v. intrathecal baclofen pumps for treating spasticity in the non ambulatory population
• Longitudinal analysis of pain and functional decline in adults
• Adult care satisfaction
• Weight trends in children with cerebral palsy and association with clinical outcomes
• Sleep disturbances in adults with CP
• And many more topics are in the concept development phase.

The results of these registry analyses will result in as many as 10 new publications in 2025 that will move the CP field forward with new knowledge and opportunities to improve health and wellbeing of people with CP.

2025 is shaping up to be a very productive year for the network and our community

We are:

1. Starting with a greater emphasis on co-production and supporting clinicians in creating successful partnerships in research and involving community members in the earliest stages of study development.
2. Several applications planned for submission to public funders like the National Institutes of Health and the Patient-Centered Outcomes Research Institute that are focused on answering important questions for our community.
3. Leveraging important partnerships with CP Alliance Research Foundation, CP Foundation, Hope for HIE, and the Newborn Brain Society in order to enhance our registry infrastructure to capture the earliest phases of life for newborns who begin life in the NICU.
4. Finalizing the release of our Adult CP toolkit for 2025.

Help us spread more seeds for CP with your donation today! Donate

We hope you will continue join us in our efforts to improve the health and wellbeing of people with CP and their families. You can support our work directly with a donation or through our partner in research, CPARF on their website.