These are the grants funded by The Pedal with Pete Foundation throughout its history. The most recent grants are listed first. Note: (AACPDM) means that the grant was submitted through the American Academy of Cerebral Palsy and Developmental Medicine.
2019, July | MicroRNAs in Magnesium-Mediated Neuroprotection (AACPDM) Maria Dizon, MD, Principal Investigator and Ann & Robert H. Lurie | Children’s Hospital of Chicago
|Research Observation||Why is this Research Important?|
|Preterm babies are at greater risk for cerebral palsy. Administration of magnesium sulfate has a preventative effect on preterm labor. Magnesium affects production of microRNAs which are critical for the development of the cells that make myelin/white matter in the brain.||If patients with or at risk for cerebral palsy have different microRNAs than healthy individuals, microRNAs could be used for early detection. Knowing the difference in microRNAs between healthy and afflicted patients could allow treatment with microRNAs that promote myelin/white matter development.|
|• What microRNAs are found in prematurely born babies?
• Are the kinds of microRNAs found in premature babies, who later develop cerebral palsy, different from those who do not develop this disease?
• Are the microRNAs different in premature babies whose mothers were given magnesium sulfate?
2019, July | Use of Collagenase Clostridium Histolyticum to Decrease Muscle Fibre Bundle Stiffness in Cerebral Palsy (AACPDM)
Jason J. Howard, MD | Nemours/Alfred I. duPont Hospital for Children
|Research Observation||Why is this Research Important?|
|Muscle stiffness in cerebral palsy has been associated with an increase in collagen in the space between muscle cells.||If collagenase injections reduce stiffness, the need for surgical intervention to achieve the same outcome may be reduced.|
|• Can injections of collagenase reduce the amount of muscle stiffness?|
2019, July | Reversal of Aged Muscle Stem Cell Dysfunction in Contractured Muscle from Cerebral Palsy (AACPDM)
Andrea Domenighetti, MD, Principal Investigator | Shirley Ryan Ability Lab
|Research Observation||Why is this Research Important?|
|Muscle cells in patients with cerebral palsy age prematurely.||Many treatments for cerebral palsy rely on exercise and surgery. This research approach could reveal a new treatment option with a drug that may reverse some of the effects of cerebral palsy.|
|• Is the DNA in these muscle cells modified and is that the cause of aging?
• If the DNA is modified, can the drug 5-azacytidine be repurposed to reverse the aging, therefore encouraging muscle growth?
2018, July | Muscle Stem Cell Dysfunction in Muscular Contractures in Children with Cerebral Palsy (AACPDM)
Sudarshan Dayanidhi, PT, PhD, Principal Investigator and Vineeta Swaroop, MD, Collaborator | Shirley Ryan AbilityLab, Chicago, IL
This study evaluates the role of muscle stem cell dysfunction in the development of contractures in people with CP and its association with age and functionality. Muscle contractures are permanent shortenings of a muscle seen in the tightest muscles of people with conditions like spastic cerebral palsy. Such contractures result in poor muscle growth that can reduce a child’s functional capacity, with limitations worsening with age. Current therapies neither prevent contracture development nor diminish recurrence following corrective surgery. Recent work by these investigators has demonstrated that the muscle stem cell pool is dramatically reduced by 60-70% in muscle contractures in older ambulatory children with CP. This study aims to quantify the relationship among muscle stem cell number, degree of contracture, age, and functional levels in children with spastic CP. Understanding the mechanism of this reduction, its relationship with age, degree of contracture, and functional levels could lead to therapies to prevent and treat muscle contractures.
2018, July | Participation, Mobility, and Gait in Adults with Cerebral Palsy: Relationships with Childhood Factors (AACPDM)
Wade Shrader,M.D., Kristen Nicholson, Ph.D., and colleagues | Nemours A. I. duPont Hospital for Children (AIDHC) Center for Cerebral Palsy and Motion Analysis Laboratory, New Castle County, Delaware
The goal of this longitudinal study is to investigate the changes in gait, mobility, and participation in adults with CP over a 20-year timespan. While significant work has been performed measuring gait outcomes in children with CP, few long-term studies have followed patients into adulthood. This research is a necessary next step toward providing the best evidence-based care. Assessments will include gait impairment and gait velocity with independence, measures of gait deterioration and severity, as well as changes over time in gait pattern, ability, and function. These factors will be evaluated from childhood, through adolescence, and into adulthood. Ultimately, this investigation aims to demonstrate how surgical treatments, personal influencers, and environmental factors of childhood are associated with adult gait, mobility, and participation outcomes.
2018, July | Supported Mobility Across the Lifespan in Cerebral Palsy: Joint Decision Making (AACPDM)
Kristie F. Bjornson, PT, PhD, MS, Principal Investigator | Seattle Children’s Research Institute, Seattle, WA | Heather A. Feldner, PT, PhD, PCS | University of Washington, Seattle, WA
Children and adults with CP might use a wheelchair, gait-trainer, or other weight-bearing device to aid in mobility. Such an aid is generally referred to as a “supported mobility device” (SMD). Families, patients, and rehabilitation teams decide whether or not to use a SMD and if so, which one to choose. This decision-making process is repeated throughout the patient’s life, as technology improves and abilities change. This investigation is the first phase in a multi-phase, mixed-methods study to investigate the processes and outcomes of SMD decision-making in adults and children with CP. This initial phase will form the foundation for understanding how SMD decision-making takes place, specifically identifying the barriers, facilitators, and strategies for people with CP to engage in joint mobility decision-making across their lifespan. The investigators will explore the influence of development, functional mobility, age, and environment on supported mobility, engaging children and adults with CP, their families, and rehabilitation providers in order to develop a supported mobility assessment tool. Specific goals of this study include understanding mobility experiences, SMD use, and desired participation outcomes of children, youth, and adults with CP. It will also determine how perspectives of rehabilitation care providers and other professionals influence the mobility decision-making processes and outcomes in people with CP and their caregivers. The desired outcome is for this foundational work to lead to further investigations that will significantly improve SMD service delivery as well as improve the quality of care for persons with CP.
2017, July | 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 (AACPDM)
Robert Akins, PhD & co-investigators: Nemours-Alfred I. duPont Hospital for Children, Willmington, Delaware
This study looked 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.
2017, July | Multimorbidity Risk Assessment and Prevention through Health –promoting Behaviors in Adolescents and Adults with Cerebral Palsy (AACPDM)
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 with respect to 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.
2017, January| Yale School of Medicine, Connecticut (AACPDM): Researchers are non-invasively studying 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.
2017, January | Nationwide Children’s Hospital in Columbus, Ohio and Purdue University in Indiana (AACPDM): Researchers are examining 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.
2016 | Nationwide Children’s Hospital, Columbus, Ohio, and, another facility in Italy (AACPDM):
Researchers investigated 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 research was very important because the earlier CP can be diagnosed, the earlier a child can be helped, and earlier treatments are usually more effective.
This research provided a “proof of concept” for applying for and receiving a much larger NIH grant for a multisite multi-year study to expand this research.
2015 – 2017 | Research facilities in Toronto and in Holland (AACPDM): Researchers compared the effectiveness of two different approaches in helping a child with CP improve their gait: the strength-based approach verses the motor-based, or learning-based approach. This information is important because of 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.
2014, March | 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.
2017, December | Case Western University, Cleveland, Ohio: Researchers studied and developed 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 is certainly preferable over current therapies where the patient is artificially prevented from using their stronger hand in order to develop function in the weaker hand!
After about 6 months of work using Pedal with Pete funding, Dr. Fu applied for and received NIH funding for a multi-year funding to expand this research!
2016, December | Hospital for Special Surgery, New York, NY (AACPDM): 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 was 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 is a significant benefit to people with CP.
2013 – 2015 | McMaster Children’s Hospital, Ontario, Canada (AACPDM): 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 focused on developing 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.
2015 | McGill University Health Center, Quebec, Canada (AACPDM): Project entitled “Community Partners for Children’s Participation”. The objective of this multi-site research was to identify the relationship between social deprivation, resources offered, and participation levels of children with CP. Then, based on these factors, interventions were developed to promote participation. Previously, little was known about “real life” contexts and the possible impact on the community-based interventions in promoting participation.
2014 – 2015 | American Academy for Cerebral Palsy and Developmental Medicine Research Institution (AACPDM): This research compared 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.
Based on this research, a grant was submitted to the Canadian Institutes of Health Research and approved. A 5 year grant (May 2014 – 2019) was secured to support this study at 22 sites in 13 countries. This research project also worked in collaboration with a site in Oxford, United Kingdom (UK) to secure additional funding with the National Institute for Health on behalf of all participating UK sites.
2014 | Case Western in Cleveland, Ohio: This research tested cryoablation to permanently resolve the drooling that so many people from CP suffer from. Previously, temporary treatments produced dry-mouth side effects which can lead to dental problems and discomfort. New treatments desperately are needed.
2013 – 2014 | Team of research doctors across the country (AACPDM): This pilot study involved using a portable device to evaluate reflex and non-reflex changes in patients with CP.
2012 | NYU Langone Medical Center: This research studied osteoporosis in children with CP, and included gene analysis.
2012 | Cincinnati’s Children’s Hospital: This research studied the effects of electrical stimulation on one of the most common gait problems in children with CP (foot drop).
2012 | Spaulding Rehabilitation Hospital: This research, conducted at the Harvard Medical School, focused on the “Effects of Transcranial Direct Cortical Stimulation (tDCS) in Cortical Plasticity and Motor Learning in Children with Cerebral Palsy”. The effects of non-invasive electrical brain stimulation were studied with the goal to improve movement and learning capabilities.
2012 | Large Amplitude Training for Children with Cerebral Palsy (AACPDM): This was a “Planning and Feasibility Study” investigating an approach that was previously successful in patients with Parkinson’s disease.
2011 | American Academy for Cerebral Palsy and Developmental Medicine (AACPDM): This project involved robotically-assisted (repetitive) physical therapy to improve mobility of arms and hands in children with CP. A collaborative group included researchers from Blythedale Children’s Hospital, Riley Hospital for Children and Rancho Los Amigos National Rehabilitation Center
2011, January | Nationwide Children’s Hospital (NCH) in Columbus, Ohio: The project “Learn from Every Patient” involved 1000 children with CP to find the best treatments and apply new standards. The results of this project have been implemented at NCH, and a NIH grant was approved to implement this methodology at other large medical centers in the USA.
Children’s Hospital Pittsburgh: Research conducted by 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.