At Cincinnati Children’s, we’re committed to changing the outcomes for our cerebral palsy (CP) patients and also those with CP across the world. Our team leads and participates in multiple clinical research trials, registries, scientific discovery and other initiatives to advance the knowledge and care for everyone with CP.
National Research: The Cerebral Palsy Research Network
Cincinnati Children’s is actively involved with the Cerebral Palsy Research Network (CPRN), a multicenter collaboration focused on advancing treatments and outcomes for people with CP. Pediatric neurosurgeon Charles B. Stevenson, MD, FAANS, is a lead researcher. Physical therapist Amy Bailes, PT, PhD, is an executive committee member and researcher. We participate in CPRN’s cerebral palsy registry, which brings together treatment and outcomes data from CPRN members. The registry data helps inform improvements to CP treatments, outcomes and future research.
Global Work to Tackle Surgical Recommendations
James McCarthy, MD, MHCM, is an international expert on cerebral palsy surgical interventions. He recently formed a panel of experts from 15 institutions around the world with the goal of developing standardized surgical guidelines for children with CP. These guidelines will outline a procedure’s appropriateness based on patient-specific symptoms, medical history and test results. This work should help eliminate the confusion patients and families currently experience when they receive conflicting surgical recommendations.
Early Intervention, Assessment and Intervention Research
Below is a list of current CP research projects at Cincinnati Children’s. If you are interested in learning more, ask your child’s care team for details.
- For Infants Who Are at High-Risk for CP
Cincinnati Children’s uses specialized assessments to identify infants who are at risk for cerebral palsy. These appointments can occur as early as 3 months “corrected age.” Corrected age is actual age minus the number of weeks or months a baby was born early (prematurely). When CP is diagnosed early, interventions can happen at a very young age, when the brain is still rapidly developing. Early interventions lead to the best outcome.
Infants who are considered high-risk for CP are eligible for a research study that includes intensive interventions to promote motor skills. Nehal Parikh, DO, MS, and Karen Harpster, PhD, OTR/L, lead this exciting research.
- For Children with Visual Problems
Pediatric ophthalmologist Terry Schwartz, MD, and Karen Harpster, PhD, OTR/L, are improving assessments to evaluate and diagnose children with cerebral visual impairment (CVI) at the earliest age possible. CVI is a form of vision loss caused by brain damage and is common in children with CP. Our research involves testing treatments that support the child’s vision and helps them function at the highest level possible.
- For Children with Upper Extremity Impairment
Jenny Dorich, PhD candidate, OTR/L, CHT, is developing a way to measure outcomes for children with upper extremity impairment based on the activities that are meaningful to the child. The measurement strategy will align with the International Classification of Function and Disability and Health. It will help children who experience upper extremity impairments resulting from various conditions, including cerebral palsy.
- For Children Undergoing Surgery
Three physical therapists at Cincinnati Children’s (Caroline Colvin, PT, DPT; Kelly Greve, PT, PhD; and Molly Thomas, PT, DPT) are working with the American Physical Therapy Association to develop intervention guidelines for children with cerebral palsy who are undergoing orthopaedic or neurosurgical procedures. These PTs also collaborate with the Division of Orthopaedics to study the effects of using neuromuscular electrical stimulation to improve functional outcomes for individuals with CP.
- Wellness Opportunities for Children with CP
Jen Angeli, DPT, PhD, is studying how participating in wellness activities in the community affects children with CP and their families. She is examining factors such as feasibility, cost and outcome. Her work will help us provide effective wellness opportunities for children and adolescents with cerebral palsy.
Research That Guides Physical Therapy Decisions
Groundbreaking research by Amy Bailes, PT, PhD, and Kelly Greve, DPT, PhD, examines the dose (frequency, intensity, time and type) of physical therapy that is best for each child. This work will help guide families when making decisions about which therapy programs to pursue for their child.
Bone Fracture Prevention
Children with severe CP often can’t do weight-bearing physical activities that strengthen bones. This increases their risk for bone fractures, which can affect a child’s quality of life. Fractures can also lead to other problems, such as contractures (a condition that makes muscles and tendons tight). Pediatric endocrinologist Halley Wasserman, MD, is exploring how a recently discovered protein (sclerostin) may play a role in bone growth in these patients. She will recruit 112 children (some with CP, others without CP) for a research study. The study includes a one-time clinic visit to measure protein levels and do a bone scan. The data collected will provide a foundation for further research. The goal is to develop therapies that promote bone formation in children with severe CP.
Muscle Contracture Discovery and Prevention
Groundbreaking research from the lab of pediatric orthopaedic surgeon Roger Cornwall, MD, has uncovered the root cause of muscle contractures and how to potentially prevent them. Previously, physicians and researchers hadn’t known the cause of contractures (a condition that makes muscles and tendons tight). Cornwall’s team discovered that these contractures are related to impaired longitudinal muscle growth and that medication might be the answer to stop them. They are conducting additional lab-based studies to bring this work one step closer to clinical trials and new treatments.
“Big Data” Strategies to Improve Care
Cincinnati Children’s has one of the most extensive and detailed patient databases in the world for kids with CP. It includes medical records for more than 8,400 patients, accounting for 3 million visits, 6.5 million procedure notes, over 8 million lab results and 5 million clinical notes.
Pediatric rehabilitation specialist and neurologist Alexis Mitelpunkt, MD, leads a multidisciplinary team to analyze this rich resource using advanced big data and machine-learning techniques. This research is in the early stages and holds great potential for helping children with cerebral palsy. Ultimately, we will:
- Diagnose children with CP earlier in life
- Identify best care practices for children with CP
- Improve care coordination with “precision medicine” personalized care plans
- Achieve better outcomes for children with CP