Research That Improves Care
Our Center has been at the forefront of research aimed at better quality of life for people with cerebral palsy (CP). We are one of the first medical institutions in the country to establish a comprehensive Cerebral Palsy patient registry. We partner with our patients and their families for research that stems from clinical practice, and is designed to improve care through new discoveries and innovative treatments. Clinical research conducted at the Center focuses on developing new tools to improve outcomes and quality of life for people with CP. Our goal is to create a clinical research model and inspire others to embark upon the study of cerebral palsy.
Ongoing Research Projects
Women’s Health Initiative: “Transforming the Healthcare of Women with Cerebral Palsy”
The purpose of this multi-center, national study is to identify barriers to and improve the healthcare of women with CP with various sites taking the lead on important women’s health issues such as pregnancy and reproductive health, breast health and mammography, and HPV prevention. The Weinberg Family Cerebral Palsy Center (WFCPC) was tasked with investigating the gynecological needs of women with CP, and to identify service barriers that these women face.
Development of the Intellectual and Developmental Disabilities (IDD) Classification Matrix
Patients with Intellectual and Developmental Disabilities (IDD) are often proxied or excluded from assessment of patient-reported outcomes and treatment effectiveness due to the inability to interact with standard measurement tools. We have created a flowchart with sequential questions that provides an unequivocal measure of the physical capability of individuals to complete a PRO. We have tested this with clinicians of various levels (Attending, PA, NP, and Medical Student) and demonstrated the tool’s near-perfect inter-rater reliability. The next phase of this project is to add parents/caregivers as another level rater and expand the study to two other collaborating sites, Nemours Hospital for Children, and Rady Children’s Hospital.
Tibial Tubercle Transfer and Medial Patellofemoral Ligament Reconstruction in Adult Patients with Cerebral Palsy and other Neuromuscular Disorders
Many patients with CP often report chronic musculoskeletal pain. One of the most common areas is the knee. Due to the primary insult of CP, muscle contractures and spasticity often leads to abnormal loading of the knee joint. Tibial tubercle transfer (TTT) and medial patellofemoral ligament (MPFL) reconstruction are common surgical techniques to restore the normal biomechanics of the joint, improve knee motion, and therefore promote pain reduction and recovery of ambulation. Though these techniques have been well studied in healthy populations, it has not been discussed in the medical literature for patients with CP. The goal of this project is to collect information on patients with CP and other neuromuscular disorders that have received TTT and MPFL reconstruction.
An Institutional Perspective of Orthopedic Procedures Performed for Patients with Cerebral Palsy
Patients with CP commonly undergo orthopedic surgeries in order to correct contractures and other deformities of bone, as a result of their underlying disorder. However, while certain surgeries, such as hip and spine, are known to be common orthopedic surgeries for this population, there is a lack of knowledge about the specific types of procedures that these patients undergo. A significant impediment to developing a comprehensive look at the trends of orthopedic surgery in patients with CP is the lack of any major registry in the United States for these patients. Therefore, the goal of this study is to identify the most common orthopedic procedures performed for patients with CP for 3 major medical centers. By gathering this information as well as pertinent demographic information, we can determine the trends of orthopedic surgical procedures for this population. With this information, it will help health care professionals to better allocate resources for the research, evaluation, and treatment of patients with CP.
Assessment of Trunk Stability and Postural Control in Children with CP
Investigators developed and tested the clinical assessment tool, Trunk Support Trainer (TruST), to assess and enhance seated trunk stability and postural control in children with CP. In conjunction with the assessment, investigators developed and tested a training protocol for improving trunk control in the most severely affected children with cerebral palsy (GMFCS IV-V). Recruitment for this pilot study is ongoing.
Creation of a Novel Risk Severity Score to Predict Pediatric Spine Surgical Site Infection in Patients with Cerebral Palsy
CP is one of the most common childhood disabilities, and up to 67% reportedly have comorbid scoliosis. Surgical treatment of scoliosis, especially neuromuscular etiologies like CP, is associated with high levels of complications. In particular, surgical site infections (SSI) lead to significant physical and financial burden on the patient, caregivers, healthcare system, and society as a whole. The purpose of this study is to develop a risk severity scoring (RSS) system to predict SSI in children with CP undergoing spinal surgery.
Validation of Pediatric Self and Proxy Report for PROMIS and NeuroQOL
Dr. Roye and Hiroko Matsumoto have been asked to participate as experts to collaborate on the validation of the Pediatric Self and Proxy Report for PROMIS and NeuroQoL in patients with CP, congenital muscular dystrophy and other neuromuscular diseases. Data is collected at the WFCPC and NIH CMD Group.
Are Antifibrinolytics Effective for Reducing Blood Loss for Patients with Cerebral Palsy Undergoing Hip Surgery?
Patients with CP are well-recognized to be at increased risk for perioperative complications such as excessive blood loss, especially in scoliosis surgery. As a result, surgeons have looked into methods of reducing blood loss through different means, such as using antifibrinolytics during surgery. While antifibrinolytics have been studied for CP scoliosis surgeries, no study has yet examined its use for hip surgical procedures. The goal of this retrospective cohort study is to examine the effectiveness of antifibrinolytics in hip surgical procedures for patients with CP.
Is Chronic Opioid Therapy Associated with Antidepressant Use in Adult Patients with Cerebral Palsy?
Chronic pain is prevalent in the CP population and is a significant impediment to one’s well-being. Anxiety and depression have been shown to be common comorbidities with chronic pain. In our experience, patients with CP are often on chronic opioid therapy and are associated with anxiety and depression symptoms as well. Patients with CP are theoretically at increased risk for opioid use, because the prevalence of chronic pain is much higher than the general population. Like opiates, antidepressants such as SSRIs are first line treatments for anxiety and depression. The gap in knowledge regarding opioid and antidepressant use in the vulnerable CP population is a serious public health issue, especially because of the potential side-effects of opiates. The objective of this study is to compare the use of antidepressant use between patients with CP on chronic opioid therapy versus those not on chronic opioids.
The Cerebral Palsy Hip Outcomes Project (CHOP)
This is a multi-center, international study that examines the longitudinal outcomes of hip pathology in children with CP. This 5-arm study aims to divide patients into 5 treatment cohorts based on the treatment decision made by the attending physician. Treatment cohorts range from natural history/watchful waiting to salvage procedures.