The Relationship Between Lower Extremity Selective Motor Control and Gait in Children With Cerebral...
Cerebral PalsyThe aim of this study is to examine the relationship between lower extremity selectivity and gait in children with cerebral palsy. 32 volunteer children with CP between the ages of 5-20 will participate in the study. The Selective Control Assessment of the Lower Extremity (SCALE) questionnaire will be used to assess lower extremity selectivity, and the Edinburgh observational gait scale will be used to assess gait. Both assessments are observational.
Cross-cultural Adaptation, Validation and Reliability of Turkish Version of Child Engagement in...
Cerebral PalsyParticipation in daily activities provides many opportunities for children to improve cognitive, physical and communication abilities. Children's participation in recreational and community activities and performance of self-care activities are considered key processes and outcomes for pediatric rehabilitation. Cerebral palsy (CP), which is one of the most common causes of disability in childhood, is more common in our country than in developed countries. Standardized functional assessment scales should be used to objectively measure participation in daily life activities in children with disability such as cerebral palsy. The aim of this study is to cross-culturally adapt the the Child Engagement in Daily Life Measure V2 (CEDL) to Turkish language and culture and to examine the structural validity and reliability of the Child Engagement in Daily Life Measure V2 (CEDL) in Turkish children with cerebral palsy.
Ultrasound Assessed Gastric Volume in the Fasted Pediatric Cerebral Palsy Patients
Cerebral PalsyIn patients with cerebral palsy, delayed gastric emptying and esophageal sphincter dysfunction are very commonly observed. Pulmonary aspiration of gastric contents causes aspiration pneumonia, which greatly affects patients' prognosis, including hospital stay and mortality. In the case of patients with cerebral palsy, there is a limitation in respiratory function, so more attention is required. Therefore, this study aims to evaluate the risk of aspiration by measuring gastric volume after fasting for surgery in children with cerebral palsy.
Prognostic Value of Generalized Movements in the Diagnosis of Neurological Diseases in Children...
Cerebral PalsyChild Behavior Disorders2 moreTo study of the evolution of general movements in children, to develop criteria for early diagnosis of neurological disorders to reduce early neurological disability. It is observational longitudinal analytical cohort study.
Cohort of Children With Severe Cerebral Palsy
Orthopedic Complications in Cerebral Palsy" Cohort CP " is a multicentre cohort study, initiated by the Hospices Civils de Lyon in September 2009. Population targeted are children with bilateral cerebral palsy, level GMFCS IV or V, aged from 2 to 10 years at inclusion. They are followed-up during 10 years, at the rhythm of 1 visit per year. At each visit are collected clinical, orthopaedic, radiological and environmental data. The primary objective is to establish the incidence of orthopaedic complications (scoliosis and hip joint) depending on patients' age. Secondary objectives are to describe the sequences over time of these complications and the related pain, to explore the impact of nutrition, surgery, asymmetric postures and environmental factors, and to describe the medical and rehabilitative follow-up of these patients. 385 patients are expected by the end of 2020. We expect of this long-term follow-up to gain tools that permit to improve patient's care and patient's quality of life, by putting in place preventing actions and adapted treatments related to their own pathologies.
Multidimensional Approach in Patients With Severe Cerebral Palsy, Prospective Cohort(MAPCP Cohort)-Offline...
Cerebral PalsySpasticIn children with cerebral palsy, secondary problems lead to hip dislocation and scoliosis. But There is no definite evidence for the dislocation of hip and scoliosis. The investigators want to verify evidence of scoliosis and dislocation of hip.
Prospective Database Registry Study of Scoliosis in Children With Cerebral Palsy
Cerebral PalsyScoliosisThe purpose of this study is to determine the radiographic and clinical outcomes of Scoliosis surgical and non-operative treatment in patients with Cerebral Palsy.
NeuralNET Cerebral Palsy Pilot Study
Cerebral PalsyThe NeuralNET Cerebral Palsy Pilot Study is testing a genetic testing pathway in the NHS for children with cerebral palsy (CP). Other studies suggest that almost one in three peoples' CP is caused by a change in their genes, but more studies are needed to confirm this. A genetic test called whole genome sequencing (WGS) will be used for children who have CP to look for rare changes in genes that cause the condition, and the results of the test will be given to children's doctors within 12 weeks. Knowing that CP has a genetic cause could lead to changes being made to a child's care or treatment that could improve their condition. The study will test 66 children with CP from 3 hospitals, and also their biological parent(s), if they're available. Following informed consent, the investigators will collect a blood sample from everyone taking part which will be sent for WGS. It is important to understand what families think and feel about the testing. The investigators will ask parents/guardians of the children taking part to fill in two questionnaires, one before and one after WGS. Some parents/guardians will also be interviewed after getting the WGS result, to ask about their experience of the testing. The study will take up to 16 months per family. The results of this pilot study will tell the investigators if it is feasible for the NHS to use WGS to test children with CP. If so, a larger study testing more children with CP can then be carried out to help decide if this type of WGS-based testing should be made available through the NHS to children with CP whose clinical care might be changed by the result. The genetic findings from this study will also be made available to other researchers and doctors to do more research into CP that might help improve general understanding of the condition and its potential treatment.
Speech Accessibility Project
Parkinson DiseaseAmyotrophic Lateral Sclerosis3 moreThe goal of the Speech Accessibility Project at the UIUC Beckman Institute (https://speechaccessibilityproject.beckman.illinois.edu) is to collect, annotate, and curate a shared database of speech samples from people with atypical speech, and share this data set with researchers at other organizations. This two-year project plans to collect 1,200,000 speech samples from 2,000 people, each of whom will provide 600 samples. In Year 1, the initial focus will be people with Parkinson's. In Year 2, four more etiologies of interest will be recruited: Amyotrophic Lateral Sclerosis (ALS), Cerebral Palsy (CP), Down Syndrome (DS), and Stroke. UIUC will build an open-source software infrastructure to collect annotated speech samples and share these data in an appropriately secure fashion with researchers from our partner technology companies (and eventually, other organizations as well) so that they can use these data to improve their automatic speech recognition algorithms. This project promotes diversity, equity, and inclusion by helping technology companies to fully support all types of speech, and it is also more efficient and less burdensome for these specialized patient populations to have one centralized "collector" of speech samples.
Pain Burden in Children and Adolescents With Cerebral Palsy
Cerebral PalsyPain in children and adolescents with cerebral palsy (CP) is a significant health challenge that so far has received too little attention. We lack knowledge on how pain is experienced, its consequences and of perceived support in managing pain. The overarching aim of the CPPain-program is to reduce pain experience, pain interference (e.g. pain burden) in children and adolescents living with CP. CPPain has a prospective cohort comparative design and will include before- and after measurements and process evaluation of a nested intervention. This protocol concerns qualitative and quantitative data collection for the baseline of the CPPain program. The aim of the baseline data collection is to contribute in-depth knowledge of the pain burden in children and adolescents with CP. This knowledge is required to develop targeted pain-diminishing interventions in this vulnerable group of children with a high burden of challenges related to their chronic disease. In the next step, nested intervention will be co-created with children and adolescents with CP, their parents as well as health care professionals, and other professional caregivers involved in or responsible for management of pain based on existing research and baseline findings.