CPRN Annual Investigators’ Meeting Breakout Session Selection

Session Title: Leadership Training for CPRN: Developing a Program

Session Leader: Edward A. Hurvitz, MD
Session Co-leaders: Laurie Glader, Garey Noritz, Brandon Rocque

Session Description:

Leadership training has become vital for the CP Research Network (CPRN), both to sustain our work and fulfill our core mission of fostering career development within the CP research community. Though many leadership programs exist, our goal is to create a specialized curriculum that equips participants with the skills needed to lead effectively within CPRN. During this session, we will present findings from the February survey, using this feedback to guide our planning and implementation process. We welcome diverse perspectives—whether you have ideas, experiences with different training models, or fresh suggestions, your input is highly valued. Special attention will be given to ensuring the program meets the needs of both professionals and community members, making leadership development accessible and practical for everyone involved in CPRN. By the end of the session, our aim is to draft the initial framework for the program, identify key next steps, and set a path toward completing the design and launching implementation. Together, we can build a robust, inclusive leadership development initiative that strengthens CPRN for years to come.

Session Objectives:

Present and discuss key findings from the February leadership training survey.
Engage participants in shaping a leadership training framework accessible to professionals and community members.
Develop goals and objectives for the program.=.
Outline next steps for finalizing program design and launching implementation.

Who Should Attend: Anyone who is interested in learning more about network leadership Anyone interested in the development of the network Anyone who wishes to share their experience with leadership programs.

Session Title: Improving Healthcare Delivery for Adults with CP: A CPRN update

Session Leader: Edward A. Hurvitz, MD
Session Co-leaders: Garey Noritz, MD

Session Description:

Adults with cerebral palsy (CP) encounter unique health challenges as they age and often face inadequate, frustrating healthcare experiences. It’s common to hear, “My doctor doesn’t know anything about CP.” The CP Research Network (CPRN) is committed to improving health and functional outcomes for people with CP. This session will highlight three projects aimed at increasing access to informed, effective care for adults with CP. Dr. Garey Noritz will discuss chronic kidney disease (CKD) in CP, exploring the use of clinical registry data to determine its prevalence and examine why CKD often goes undiagnosed due to lower muscle mass in CP. The study aims to improve early detection through tailored screening protocols. Dr. Cristina Sarmiento will share updates on her NIH-funded work to enhance preventive care, including the development of an online tool that helps individuals with CP and their providers better understand and address healthcare needs. Dr. Ed Hurvitz will report on a survey conducted through MyCP, examining adults’ satisfaction with their healthcare and their interest in seeing providers specializing in adult CP care. For each project, we will present the current status and discuss next steps to advance the work and improve outcomes for adults with CP.

Session Objectives:

• Highlight importance of understanding the prevalence and detection of chronic kidney disease (CKD) in adults with CP, and how to improve screening methods.
• Present progress on preventive care initiatives and development of an online health tool to facilitate primary care interactions for adults with CP.
• Review survey results regarding healthcare satisfaction and interest in CP-specialized providers.
• Engage attendees in dialogue about project status and future directions to enhance adult CP care.

Who Should Attend: Anyone with an interest in healthcare for adults with CP and/or an interest in healthcare delivery in general.

Session Title: Grant Readiness - what it takes to prepare for an external grant using CPRN resources

Session Leader: Sruthi P. Thomas, MD, PhD
Session Co-leaders: Bhooma Aravamuthan, MD, DPhil, Steve Wisniewski, PhD, Joyce Trost, PT, PhD

Session Description:

One of the goals of CPRN is to have our investigators funded for CPRN-backed studies. The purpose of this breakout session is to guide all investigators who are considering submitting a R01, PCORI or other grant in the CPRN process. We, the session leaders, are independently funded with R01s and have been through a tedious iterative process with both NIH and PCORI. The session will cover basic steps in grant creation, submission, and resubmission. We will highlight how CPRN registry data can be used as preliminary data for your grant, as well as how you can partner with CPRN for registry integration and Community Co-Investigator engagement. We will cover the role of different components of large grants and the collaborative work of the team in refining the study question and developing a study design. Finally, we will highlight some pitfalls we have uncovered over the years in hopes of a smoother ride for everyone else!

Session Objectives:

• Review the basic steps in large collaborative grant preparation
• Provide an example of interdisciplinary partnership
• Describe the process to engage with the DCC and CPRN in grant preparation
• Highlight some common pitfalls in the grant creation and submission process

Who Should Attend: • Anyone considering submitting a grant to a foundation or federal funding agency that will involve CPRN resources •Anyone who is a masochist •Anyone with experience submitting federal grants who can provide their personal experience in the Q&A

Session Title: Complete, clean, and credible: the power of continuous data improvement

Session Leader: Patrick McPhee, PhD
Session Co-leaders: Joyce Trost, PT, PhD

Session Description:

High-quality clinical registries are essential for advancing evidence-based care, particularly for individuals with cerebral palsy (CP), a heterogeneous condition requiring coordinated, lifelong management. However, incomplete data capture limits the reliability of benchmarking, quality measurement, and research translation. This breakout session will describe a quality improvement (QI) initiative designed to enhance data completeness within a CP clinical registry and to discuss its impact on improving data quality over time.

The initiative centered on systematic site-level feedback reports detailing completeness rates for required registry elements, including key demographic, functional, and clinical variables. Reports were distributed at regular intervals and presented in a structured format that enabled comparison over time and across sites. Each report identified the number of unique patients with missing required data elements, allowing local clinical teams to review records, clarify documentation gaps, and update registry entries. Multidisciplinary teams—including clinicians, coordinators, and data managers—used these reports to integrate data review into routine workflow, prioritize high-impact variables, and address structural barriers to documentation.

Over time, some sites demonstrated progressive improvements in overall data completeness. Enhanced capture of standardized functional measures can improve the registry’s capacity to support risk stratification, longitudinal tracking, and quality benchmarking. Importantly, the process of identifying patients with missing data frequently reveals gaps in clinical assessment or follow-up, prompting corrective action and reinforcing adherence to care guidelines.

This initiative demonstrates that structured feedback and local engagement are effective strategies for improving registry data completeness. Strengthening data quality not only enhances research validity but also directly supports improved clinical decision-making and care delivery for individuals with CP.

Session Objectives:

1. Describe the role of structured feedback in improving registry data completeness
2. Apply practical strategies to integrate data quality review into clinical workflows
3. Explain the value of data completeness from required registry elements to improve clinical care

Who Should Attend: This session is ideal for individual or multidisciplinary teams involved in CPRN registry participation, quality measurement, or clinical program improvement, particularly those seeking actionable strategies to link more complete data with better care.

Session Title: Orthopedic Surgery in the CPRN Registry - a Brand New Day!

Session Leader: Wade Shrader, M.D.
Session Co-leaders: none

Session Description:

This session will build upon the 2025 orthopedic surgery consensus breakout group to define specific projects for orthopedic surgery within the CPRN community.

Specifically, we will discuss orthopedic surgical case entry, EPIC CPT capture and transfer, and we will determine at least one orthopedic surgery project for the Network for 2026-27.    This will include likely pilot studies involving key EPIC sites to test CPT capture, as well as a broader group initiative to obtain consensus of "SEMLS/MLS" definitions.    The cadence and format of the Orthopedic Surgery Study Group will also be discussed amongst the group (with the first session occurring in March 2026).

If time allows, work will begin to review, edit, and approve orthopedic  surgical descriptions in the Network, which has not been revisited since the launch of the Orthopedic forms at the beginning of the Network.

Session Objectives:

1. Reinforce the importance of the Orthopedic Surgical Working Group monthly meetings
2. Discuss progress in CPT capture and verification at EPIC sites for transfer of surgical codes into the Registry
3. Develop list of potential targets/topics for EPIC sites to launch pilot study
4. Introduce SEMLS/MLS Definition Consensus study

Who Should Attend: Orthopedic surgeons

Session Title: Nourishing Progress: Current Insights and Future Directions from the CPRN Nutrition Study Group

Session Leader: Judy-April Murayi, MD, MPH
Session Co-leaders: Praveen Goday, MD; Richard Stevenson, MD

Session Description:

Optimal nutrition is a cornerstone of lifelong health and function for individuals with cerebral palsy (CP), yet it remains an understudied topic of clinical management. This 75-minute breakout session, led by members of the CP Research Network Nutrition Study Group, provides a  look at the current landscape of nutritional research and its practical applications for the CP community.

Our multidisciplinary panel of physicians and researchers will share a high-level summary of active and completed projects within the network aimed at optimizing nutrition and growth for children with CP. A central highlight of the session will be the presentation of new findings derived from the CP Research Network Registry. By leveraging this robust data, our team will illustrate current trends in nutritional interventions and identify critical gaps in care that impact pediatric populations.

Designed for community members, parents, clinicians, and researchers, this session intends to foster an interactive dialogue. We will discuss recent clinical updates and "lessons learned" from our ongoing studies, while carving out dedicated time to brainstorm future research priorities. Participants will gain a deeper understanding of how registry-driven evidence is being translated into clinical practice and will have the opportunity to voice the questions and concerns that should drive our next phase of investigation. Together, we will define a roadmap for nutritional care that is evidence-based, community-informed, and focused on improving the quality of life for individuals with CP.

 

Session Objectives:

Attendees will gain a clearer understanding of how ongoing research projects can be translated into practical nutrition strategies for children with CP.

Through interactive discussion, community members and clinicians will collaboratively identify and prioritize at least three areas of need to help guide the Nutrition Study Group’s future research initiatives.

Who Should Attend: This session is designed for everyone in the CP community—including self-advocates, families, clinicians, and researchers—who wants to see how data-driven nutrition research translates into real-world health.

Session Title: Surgical Spasticity Models of Care

Session Leader: Sruthi P. Thomas, MD, PhD
Session Co-leaders: Jeffrey Leonard, MD

Session Description:

Building on the success of the CP Models of Care presentation series, we propose a Surgical Spasticity Models of Care breakout session. The purpose of this series is dual in nature: 1) provide growing centers with qualitative information on how others have setup these interdisciplinary clinics, and 2) gather preliminary data necessary for multiple grant concepts being considered in the CPRN neurosurgical study group. All CPRN centers will be surveyed to capture qualitative data on their surgical tone management clinics. A group of centers will be invited to present to CPRN during scheduled meetings, like CP Models of Care. For those centers currently capturing outcome measures (e.g. GOAL, CPCHILD), we would like to compare differences between those with interdisciplinary clinics and those with solo practices. The purpose of this breakout will be to determine the data to be collected, design the survey on tone management clinics sent to all CPRN centers, and determine presentation requirements. Key breakout discussion points will include ambulatory v. non-ambulatory approaches, how to capture solo practices, and how to capture as much detailed quantitative and qualitative data as possible.

Session Objectives:

• Determine which qualitative and quantitative data will be captured with this presentation series, keeping in mind future grant submissions.
• Design a survey that can be sent to all CPRN centers to gather data on surgical tone management clinics
• Create a a list of presentation requirements.

Who Should Attend: • Anyone interested in surgical tone management • Anyone considering submitting a grant on surgical tone management in the next 2-5 years

Session Title: A Universal Design Workshop to Improve Survey Platform and Design Usability

Session Leader: Eric M. Chin, MD
Session Co-leaders: Eric Chin, Eric Moore (on behalf of the CPRN Adult Registry Working Group and Kennedy Krieger Institute Accessibility Initiative Team)

Session Description:

The Community Registry has been enormously productive for studying person-centered challenges (e.g. chronic pain, functional decline) faced by adults with cerebral palsy. However, survey and platform design have been identified as persistent barriers to broad, equitable participation. We are committed to identifying and implementing solutions that remove these barriers and promote equitable participation. Doing so will not only expand opportunities for individuals to contribute, but also strengthen the scientific validity of the Registry’s findings by ensuring that perspectives currently underrepresented are meaningfully included.

One framework for removing barriers to environments and systems is Universal Design. Universal Design philosophy aims to engineer environments and systems to be usable by the greatest possible range of individuals without requiring additional personalized adaptation. We have enlisted the help of Universal Design specialists from Kennedy Krieger Institute, along with people with lived experience and CPRN Registries Team members, to join forces in a real-time troubleshooting workshop to identify practical solutions for survey design challenges impacting usability and participation.

Session Objectives:

This session will (1) document survey and platform design barriers that limit equitable participation, centering input from individuals with lived experience, and (2) generate evidence-informed, expert-validated recommendations for remediation grounded in Universal Design and accessibility best practices.

Who Should Attend: 1) Investigators interested in equitable research participation; 2) People with lived experience related to inaccessible survey platform and design; and 3) Clinicians interested in implementing Universal Design principles to survey-based data collection

Session Title: Proposing to efficiently capture conceptual, practical self-help, and social abilities data across the lifespan

Session Leader: Eric M. Chin, MD
Session Co-leaders: Eric Chin, Brooke Kimbrell, Fabiola Morales-Vias, Lisa Jacobson

Session Description:

Quantifying abilities, strengths, and weaknesses across the spectrum of people with cerebral palsy is an enormous challenge but is critical for advancing person-centered outcomes research in the CPRN Clinical Registry.

We propose adding Adaptive Behavior scores as Clinical Registry elements. Adaptive Behavior assessments are well-established standardized questionnaire batteries querying a wide range of abilities (conceptual/academic, practical self-help, and social) with norms established across the lifespan. Adaptive Behavior assessments are commonly used in clinical psychology assessments as scores provide context for performance-based cognitive assessments. Addition to the Clinical Registry (even retrospectively) has the potential to rapidly, substantially augment cross-domain functional abilities data.

In this session, neurodevelopmental physicians and psychologists will provide background on Adaptive Behavior assessments including potential challenges in interpreting scores in heterogenous populations of children and adults with cerebral palsy. We will present preliminary data regarding relationships between Adaptive Behavior scores, GMFCS, and communication abilities in children with cerebral palsy. Finally, we will moderate open discussion regarding strategies for measuring dimensions of functioning across the lifespan.

Session Objectives:

This session will foster discussion considering potential benefits and challenges for including adaptive behavior scores as measures of functioning across the lifespan.

Who Should Attend: 1) Investigators interested in functional abilities and their trajectories; 2) Clinicians interested in identifying strengths to consider in treatment planning; and 3) People with lived experience who can speak to changes in functioning that have been or would be meaningful to them

Session Title: Shared Decision-Making to Prioritize 2026 Community Registry Updates

Session Leader: Eric M. Chin, MD
Session Co-leaders: Eric Chin (on behalf of the CPRN Adult Registry Working Group)

Session Description:

The Community Registry has been enormously productive for studying person-centered challenges (e.g. chronic pain, functional decline) adults with cerebral palsy face. Our recent priority-setting study identified additional high-priority research questions and persistent barriers to broad, equitable participation. 

We propose a structured shared decision-making framework for prioritizing updates to adult Community Registry surveys. In this breakout session, moderated by Session Co-Leaders and informed by results of the priority-setting study (and any novel ideas that attendees bring to the session), we will draft a list of self-contained update ideas. We will then ask CPRN attendees at large to prioritize these ideas via online survey. Survey responses will be anonymous but with responder type(s) queried (investigator, clinician, and/or person with lived experience) so that rank analysis can be performed respecting the priorities of all three groups. 

Session Objectives:

We anticipate actionable data from a wide range of CPRN members that will help plan Adult Registry updates for 2026 and beyond.

Who Should Attend: Investigators, clinicians, and people with lived experience interested in adult outcomes—especially those who come with actionable ideas

Session Title: Genetics in Cerebral Palsy: From Diagnosis to Precision TherapeuticsSession Leader: Jennifer Bain, MD, PhD
Session Co-leaders: Jason Carmel

Session Description:

Advances in genomic technologies have transformed our understanding of cerebral palsy (CP), revealing that a meaningful subset of patients previously classified as having acquired CP may have an underlying genetic etiology. At the same time, rapid progress in precision therapeutics is creating new opportunities to translate genetic diagnoses into targeted treatment strategies. This session will provide a practical and forward-looking discussion focused on integrating genetics into routine CP care and preparing the field for precision medicine–based interventions.

This session will address three key areas:

1. The evolving role of genetics in CP diagnosis and phenotyping
2. Practical pathways to genetic testing for patients with CP
3. Readiness of the CP field for precision therapeutics

Rationale
Historically, CP has been defined by clinical phenotype and presumed perinatal injury. However, emerging data suggest that genetic contributions may be present in 10–30% or more of individuals with CP phenotypes, particularly in those without clear risk factors. Despite increasing recognition, variability remains in when and how clinicians pursue genetic testing. Additionally, the CP field must prepare for the growing pipeline of gene-targeted therapies and mechanism-based treatments.

This session will bridge the gap between discovery science, clinical implementation, and future therapeutic readiness.

Session Content
Part 1: The Role of Genetics in Cerebral Palsy

• Overview of genetic contributions to CP phenotypes
• Phenotypic clues suggesting genetic etiology
• Impact of genetic diagnosis on prognosis, counseling, and management

Part 2: Pathways to Genetic Testing for Patients with CP

• Who to test: clinical decision frameworks
• What to order: panels vs exome vs genome
• When to test: early diagnosis vs later reevaluation
• Barriers to testing (insurance, access, interpretation)
• Integrating genetic results into multidisciplinary CP care

Part 3: Readiness for Precision Therapeutics in CP

• Current landscape of gene-targeted and pathway-based therapies
• Infrastructure needs (registries, natural history data, biomarker development)
• Ethical and access considerations
• Role of CP networks in trial readiness and patient identification

Impact on the CP Community
This session will help standardize approaches to genetic evaluation in CP, support earlier identification of patients eligible for emerging therapies, and help prepare the CP clinical and research community for precision medicine–based care models.

 

Session Objectives:

By the end of this session, participants will be able to:
> Recognize clinical features that should prompt consideration of genetic testing in CP
> Describe current evidence supporting genetic contributions to CP phenotypes
> Identify practical testing strategies including exome, genome, and targeted panels
> Understand current and emerging precision therapeutic approaches relevant to CP-related genetic diagnoses
> Evaluate system-level readiness for implementing precision therapeutics in CP populations

Who Should Attend: Pediatric neurologists , Developmental pediatricians , Physiatrists , Geneticists and genetic counselors, CP researchers and clinical trial investigators , Allied health professionals involved in CP care

Session Title: Using GOAL and CPCHILD for Shared Decision Making Rather than Just Pre- Post- metricsSession Leader: Paul Gross, BA
Session Co-leaders: Unni Narayanan, MBBS, Kristie Bjornson, PT, PhD

Session Description:

This session will describe how physicians, therapists and caregivers about  clinical use of the Caregiver Priorities & Child Health Index of Life with Disability (CPCHILD) and the Gait Outcomes Assessment List (GOAL) for shared decision making--through IMPROVE CP, a now publicly available web-based implementation in clinical practice from CPRN.org.

Despite major advances in care, substantial gaps in evidence remain regarding the effectiveness of many interventions for children with CP. This contributes to wide practice variation and challenges for shared decision-making between families and clinicians. High-quality clinical research and patient-centered care depend on validated outcome measures that capture what matters most to children with CP and their caregivers.

The electronic versions--eCPCHILD and eGOAL--generate real-time summary reports that include total and domain-specific scores alongside a prioritized list of caregiver-and patient-identified goals. When integrated with clinical encounters, these ePROMs empower families to articulate their priorities and enable clinicians to efficiently guide discussions, manage expectations and make recommendations aligned with patient and parent goals, thereby facilitating shared decision-making.

Although the CPCHILD and GOAL have been widely used in research and featured in AACPDM educational sessions, implementation in routine clinical care has historically required substantial institutional resources. IMPROVE CP, hosted on the the cprn.org website and publicly available, addresses this barrier by providing a scalable platform for ePROM completion and automated report generation. This approach makes goal-informed, shared decision-making feasible across diverse care environments—including primary care, rural clinics, and tertiary care centers. Adoption of these tools by CPRN as primary PROMs further supports their integration from research into everyday clinical care for children with CP.

Session Objectives:

1. Understand the features of the GOAL and CPCHILD as shared decision-making tools for engaging families around surgical interventions and desired outcomes aligned with patient and parent goals.
2. Appreciate the benefit of the real-time integration of reporting from the GOAL and CPCHILD in their pre-surgical clinical visits.
3. Understand how to access resources to be trained in using the eGOAL and eCPCHILD for shared decision making between providers and patient families.
4. Understand how to request and receive HIPAA compliant GOAL and CPCHILD reports from patient families through MyChart or other patient communication platforms.
5. Understand how the patient reports will be generated on CPRN.org and included into the patient medical record.
6. Discuss how these data will get into the registry in the future.

Who Should Attend: Physicians, therapists and caregivers of children with cerebral palsy (CP) interested in shared decision-making and access to the eCPCHILD or eGOAL electronic Patient-Reported Outcomes Measures (ePROMs) in their clinical settings.

Session Title: Clinic to the community connections for adaptive physical activity: creating a NCHPADconnect for children

Session Leader: Mary Gannotti, PT, PhD
Session Co-leaders: Shusterman M, Bjornson K, Fogel F, Wyeth D, and Kailes J,

Session Description:

Last Fall we gathered Physical Activity Champions at Cerebral Palsy Research Network clinical sites and in the community to explore feasibility and perceptions of adapting NCHPADconnect, an online resource for adults with disabilities that provides online health and wellness programing as well as assistance in finding local resources, for children.

We have completed many focus groups and one on one interviews with clinicians, adaptive sport providers, and people with lived experience since that time.  During the session, we will present a summary of themes, perceptions, and ideas gathered to date. We will have a discussion about additional information needed and engagement of additional stakeholders.  We will also brainstorm ideas for implementation of suggestions, the resources needed, feasibility and logistics. Additionally, we will explore necessary steps for implementation.

Session Objectives:

1) Share findings gathered to date with interested clinicians, consumers and researchers
2) Gather new ideas about additional information needed and engagement of additional stakeholders
3) Gather ideas about feasibility, logistics, and implementation.

Who Should Attend: researchers, clinicians, and consumers interested in advancing physical activity opportunities for children

Session Title: Toward National Consensus in Neurosurgical Tone Management: Designing a Pediatric Neurosurgery Delphi Study for GMFCS IV–V Cerebral Palsy

Session Leader: Neena I. Marupudi, MD, MS
Session Co-leaders: Sruthi Thomas, MD, PhD; Jeffrey Leonard, MD

Session Description:

Substantial practice variation exists in neurosurgical tone management for nonambulatory children with cerebral palsy (GMFCS IV–V), particularly in the selection of selective dorsal rhizotomy (SDR), ventral–dorsal rhizotomy (VDR), and intrathecal baclofen (ITB). Preliminary data from the Cerebral Palsy Research Network (CPRN) demonstrate significant institutional heterogeneity in procedural preference, age at intervention, and tone subtype distribution, underscoring the absence of standardized, evidence-based selection criteria.

This breakout session will engage pediatric neurosurgeons in a structured discussion to curate and refine key questions for a national survey and Delphi process aimed at characterizing decision-making criteria, surgical philosophy, interdisciplinary dynamics, and perceived indications for SDR/VDR versus ITB in nonambulatory CP. Participants will collaboratively identify the domains most critical to procedural selection, including tone phenotype, dystonia burden, orthopedic status, pain, caregiver priorities, and institutional resource considerations. The group will explore areas of consensus and genuine clinical equipoise, refine survey language to ensure clarity and neutrality, and develop a framework for iterative Delphi rounds designed to move the field toward consensus statements.

By the conclusion of the session, attendees will have generated a preliminary question bank and domain structure suitable for national deployment through ASPN and the AANS/CNS Pediatric Section. This initiative represents a foundational step toward harmonizing practice patterns and informing the design of a future prospective multicenter comparative effectiveness trial in GMFCS IV–V CP.

Session Objectives:

The objectives of this session are to curate high-priority survey domains that reflect real-world neurosurgical decision-making, identify areas of strong consensus versus true clinical equipoise, develop a structured framework for a national Delphi study, and refine survey language to ensure clarity, neutrality, and reproducibility. Anticipated outcomes include a finalized core question bank ready for national distribution, clearly defined consensus thresholds for Delphi methodology, identification of philosophical and systems-level drivers of practice variation, and engagement of a national working group prepared to serve as Delphi panelists and site champions. This session will directly inform the development and deployment of a national pediatric neurosurgery survey as part of a broader effort to establish evidence-based, goal-directed algorithms for tone management in nonambulatory CP.

Who Should Attend: This session is intended for pediatric neurosurgeons who perform SDR, VDR, or ITB, CPRN investigators interested in multicenter research, and multidisciplinary collaborators in PM&R and orthopedic surgery involved in tone management. It will be especially valuable for clinicians caring for GMFCS IV–V children who seek to address practice variability and help define data-driven national standards.

Session Title: Current progress and future directions in dystonia research

Session Leader: Rose Gelineau-Morel, MD
Session Co-leaders: Rose Gelineau-Morel, Bhooma Aravamuthan, Sruthi Thomas

Session Description:

Dystonia in cerebral palsy is an active area of research within the CPRN with many ongoing studies.  Yet, it can be difficult for CPRN members to keep abreast of the ongoing research and identify opportunities to participate.  In this session, we will highlight current dystonia research projects in the CPRN community, including dystonia quality improvement projects, the CPRN imaging registry and proposed video registry, and clinical trials.  We will also discuss potential future studies.  The session will be organized with each current project briefly discussing objectives, current progress, and future plans, followed by a period for questions and brainstorming about future directions.  Participants will have an opportunity to become more involved in dystonia research and actively contribute to the direction of dystonia research in the CPRN.

Session Objectives:

1. Gain knowledge of current dystonia research in the CPRN
2. Identify areas for future research
3. Identify potential collaborators and areas of interest in which to become involved

Who Should Attend: Those interested in learning more about or getting involved in dystonia research

Session Title: Social Determinants of Health in CP – an Important, Relevant, and Overdue “Big Idea”

Session Leader: Joline Brandenburg, MD
Session Co-leaders: Christopher Joseph, PT, DPT

Session Description:

In 2024, identifying and describing Social Determinants of Health (SDOH) in individuals with CP utilizing the CPRN was voted the “Next Big Idea”. A significant component for evaluating SDOH is zip code, which, unfortunately, was not being routinely collected in the CPRN. Now that study sites in the CPRN are including zip codes, progress is being made to evaluate SDOH in CP using CPRN data. In this session, we will define SDOH and present what is known about SDOH and CP. We will also discuss ways to measure SDOH, with a focus on the Childhood Opportunity Index 3.0 (COI). Updates on the SDOH workgroup progress, including data on individuals with CP and relationship to opportunity, will be presented. Lastly, we will brainstorm ideas for variables of interest that may be impacted by SDOH to help frame future work and/or drive data to be reported by CPRN sites.

Session Objectives:

After this session, participants will be able to
1) Define Social Determinants of Health (SDOH)
2) Describe the Childhood Opportunity Index and its relationship to SDOH
3) Understand barriers, facilitators, and progress in evaluating SDOH using CPRN data
4) Participate in determining a set of potential new variables to include in future SDOH work using CPRN data and priority recommendation for these data elements

Who Should Attend: Anyone who would like to better serve their patients with CP through studying, recognizing, and acknowledging the impact of SDOH in the CP community and specialty healthcare.

Session Title: Connecting the Dots: Neurodevelopmental Monitoring, Early Developmental Clinics, and Cerebral Palsy Diagnosis

Session Leader: Brooke Kimbrell, MD MSE
Session Co-leaders: Lisa Letzkus; Patrick McPhee

Session Description:

Central nervous system injury in early life is strongly associated with a wide range of neurodevelopmental disorders, including developmental delay, intellectual disability, specific learning disorders, ADHD, mood disorders, and other psychiatric conditions. Individuals with cerebral palsy (CP) carry the highest risk of co-occurring neurodevelopmental disorders, yet current CP guidelines lack specific recommendations for standardized cognitive screening timelines and tools across the lifespan. At the same time, as early detection of CP becomes more standardized, the functional boundary between Early Developmental Clinics (EDCs) and CP clinics is increasingly blurred.

EDCs are structured to provide surveillance, risk stratification, standardized neurologic assessment, and early referral for infants at high risk of disability. CP clinics, in contrast, focus on diagnosis confirmation, tone and movement disorder management, orthopedic surveillance, spasticity treatment, equipment planning, and long-term functional optimization. This interactive session will explore how goals shift—and overlap—across these care models, and how neurodevelopmental monitoring from NICU follow-up through childhood and adulthood can be better integrated.

We will present findings from a CPRN-wide survey describing current cognitive and psychiatric assessment practices in preschool, school-age, and adult CP populations, highlighting practice variation and gaps in care. Participants will examine key transition triggers (e.g., abnormal General Movements Assessment, concerning HINE scores, neuroimaging findings, persistent motor asymmetry) and discuss optimal timing for transition between clinics. The session will culminate in development of a consensus-based transition checklist to clarify roles, align surveillance and diagnostic pathways, and promote coordinated, family-centered neurodevelopmental care across the continuum.

Session Objectives:

• Describe current practices in neurodevelopmental surveillance and assessment for individuals with CP from infancy through adulthood, including findings from the CPRN network survey.
• Define the distinct and overlapping roles of Early Developmental Clinics and CP clinics, including key transition triggers and optimal timing for transfer of care
• Explain how co-occurring neurodevelopmental and psychological disorders influence motor, functional, and long-term outcomes in individuals with CP.
• Identify opportunities to standardize cognitive and psychological screening, including refinement and expansion of CPRN data elements across the lifespan.
• Develop a practical, family-centered transition framework and checklist to guide coordinated implementation of CP-specific care pathways across clinic settings.

Who Should Attend: This session is designed for individuals with lived experience, developmental-behavioral pediatricians, pediatric neurologists, neonatologists, nurse practitioners, therapists, care coordinators, NICU follow-up providers, quality improvement leaders, administrators, and researchers involved in high-risk infant follow-up and CP care. It is particularly relevant for clinicians and investigators seeking to reduce practice variation, improve coordinated neurodevelopmental monitoring, and better understand differences in treatment response and long-term outcomes.