Most recent listed first.
Development and Validation of Epigenetic Signatures for Dyskenetic and Ataxic CP by Evaluation of DNA Collected from Peripheral Blood Samples and Determination of DNA Methylation Pattern Differences Among Genes Associated with CP Diagnosis
Robert Akins, PhD & co-investigators: Nemours-Alfred I. duPont Hospital for Children, Willmington, Delaware
This study will look for biomarkers in the DNA of people with dyskenetic and ataxic CP with a goal to help in CP diagnosis. A previous study by the group found a DNA biomarker in people with spastic CP. This is important because early diagnosis of CP remains difficult; earlier diagnosis allows earlier interventions. Additionally, an understanding of the differing DNA markers for CP can indicate the best treatment plans for the patient, saving critical time for interventions.
Multimorbidity Risk Assessment and Prevention through Health –promoting Behaviors in Adolescents and Adults with Cerebral Palsy
Jan William Gorter and co-investigators: McMasters University, Ontario Canada, University of Michigan College of Medicine, & Erasmus Rehabilitation Medical Center, Rotterdam, the Netherlands
This study seeks to rigorously study the impacts of physical activity, sleep, and diet in preventing stroke and heart disease in patients with cerebral palsy. While such impacts are documented in the population that does not have disabilities, the population who has CP and other physical disabilities is not widely studied w.r.t. the impact of preventative behaviors. Typically, people with CP are not coached with the same energy toward healthy behaviors. The researchers’ aims are to show that such health-promoting behaviors can have similar impacts with people who have CP.
Yale School of Medicine, Connecticut: Researchers will non-invasively study the brains of premature infants using advanced MRI techniques to determine the relationship between oxygen levels provided in the hospital and the impact on outcome with respect to cerebral palsy. Although low levels of oxygen related to prematurity are known to cause damage to the brain, further damage could also be caused by giving too much supplemental oxygen. This research can thus lead us on the path to prevention of some causes of cerebral palsy.
Nationwide Children’s Hospital in Columbus, Ohio and Purdue University in Indiana: Researchers will examine the relationship between swallowing and speech mechanisms at several physiological levels. A better knowledge of typical and atypical development of swallow and speech could lead to improved treatments for these functions in cerebral palsy, which have the potential to be life-changing and life-saving.
Nationwide Children’s Hospital, Columbus, Ohio, and, another facility in Italy: Researchers will begin work on a method to diagnose and detect cerebral palsy at the earliest stages of infancy based simply on a baby’s movement patterns in the crib or incubator. This is so exciting because the earlier CP can be diagnosed, the earlier a child can be helped, and earlier treatments are usually more effective.
Research facilities in Toronto and in Holland: Researchers will compare the effectiveness of two different approaches to helping a child with CP improve their gait: The strength-based approach verses the motor-based, or learning-based approach. This is important so that the time children and families spend in training is used effectively; kids with CP see many specialists, and effective time-management is a key factor in quality of life.
Research facilities in Minnesota and Ontario: Researchers will refine and improve the urinary, bladder-control questionnaires that health care workers and families use when interacting with adults with CP who have various levels of communication ability. This is important because current protocol is to use questionnaires that apply to all patients with neurological bladder control issues, and patients with CP may have more issues in play, and may need a more refined approach. Additionally, better care in this area not only leads to quality of life, but it also can prevent life threatening infections.
Case Western University, Cleveland, Ohio: Researchers will develop therapies where people with CP who are strong on one side and weaker on another can use a special glove on their strong hand and can then “teach” their weaker hand how to move effectively through electronic brain stimulations. This approach could certainly be much preferable over current therapies where the patient is artificially prevented from using their stronger hand in order to develop function in the weaker hand!
Hospital for Special Surgery, New York, NY: Project entitled: “The effect of using e-Aminocaproic acid (EACA) to reduce bleeding during hip surgery”. VRO surgery (i.e., varus rotational osteotomy) is conducted on many CP patients to maintain a level pelvis, a balanced spine, and mobile pain free hips. The purpose of this study is to determine whether the medication, EACA, can be effective in decreasing blood loss and the transfusion requirements after the surgery. The factors of blood loss and transfusion requirements can impact the length of hospital stay and can result in other complications. Such surgery is extremely common in patients with CP, and reducing these complications could be a significant benefit to people with CP.
McMaster Children’s Hospital, Ontario, Canada: Project entitled: “Development of Multimedia Education Modules for Families of Children with CP”. The World Health Organization has created a universal framework for health (i.e., the International Classification of Functioning, Disability and Health or ICF). Using the ICF framework, this project aims to develop informational resources that meet the needs of parents and families of children with CP to help them to better understand the health condition and the treatment of their child.
McGill University Health Center, Quebec, Canada: Project entitled “Community Partners for Children’s Participation”. The objective of this multi-site research is to identify the relationship between social deprivation, resources offered, and participation levels of children with CP. Then, based on these factors, interventions will be developed to promote participation. Currently, little is known about “real life” contexts and the possible impact on the community-based interventions in promoting participation.
American Academy for Cerebral Palsy and Developmental Medicine (AACPDM): AACPDM Research Institution: Research compares outcomes for patients with CP based on when and if they receive surgery for hip dislocation. Such surgery is very common for people with CP, and the timing of treatment is problematic because of the developmental issues.
Case Western in Cleveland, Ohio: Research tests cryoablation to permanently resolve the drooling that so many people from CP suffer from. Current temporary treatments produce dry-mouth side effects which can lead to dental problems and discomfort. New treatments desperately are needed.
AACPDM team of research doctors across the country: Pilot study involving a portable device to evaluate reflex and non-reflex changes in patients with CP.
NYU Langone Medical Center: Research studies osteoporosis in children with CP, and includes gene analysis.
Cincinnati’s Children’s Hospital: Research studies the effects of electrical stimulation on one of the most common gait problems in children with CP (foot drop).
Spaulding Rehabilitation Hospital: Harvard Medical School’s “Effects of Transcranial Direct Cortical Stimulation (tDCS) in Cortical Plasticity and Motor Learning in Children with Cerebral Palsy” studies the effects of non-invasive electrical brain stimulation with the goal to improve movement and learning capabilities.
AACPDM’s “Large Amplitude Training for Children with Cerebral Palsy: A Planning and Feasibility Study” investigates an approach that was previously successful in patients with Parkinson’s disease.
American Academy for Cerebral Palsy and Developmental Medicine (AACPDM): Project involves robotically-assisted (repetitive) physical therapy intending to improve mobility of arms and hands in children with CP.
Nationwide Children’s Hospital (NCH) in Columbus, Ohio: The project “Learn from Every Patient” involves 1000 children with CP to find the best treatments and apply new standards.
Children’s Hospital Pittsburgh: Dr. Tyler-Kybera
University of Wisconsin: A pilot study headed by Dr. Ruth Benedict entitled “Outcomes of Interventions for Spasticity Management among Children and Young Adults with Cerebral Palsy and their Caregivers.” This study uses strength training with patients with CP and measures the impact on their gait and self-esteem.
University of South Carolina: Research headed by Dr. Noelle Moreau entitled “In Vivo Assessment of Quadriceps Muscle Plasticity in Children with Cerebral Palsy.”
Children’s Hospital, Pittsburgh and University of Wisconsin: Several research projects headed by Dr. Leland Albright, a pioneer in the use of the Baclofen Pump (ITB Therapy, or intrathecal baclofen therapy) which is a precise, targeted therapy used to reduce severe spasticity caused by cerebral palsy.