Our Cerebral Palsy Research Studies

This quality improvement protocol seeks to reduce the infection rate of intrathecal baclofen (ITB) pumps. ITB pumps have a high infection rate. Infections require the removal of the pump. Reducing the post surgical infection rates with these devices is the key aim of this protocol.

This quality improvement protocol seeks to improve the consistency of physicians assessing children with cerebral palsy for the presence of dystonia in CP.

This quality improvement protocol seeks to increase the number of children with cerebral palsy that receive timely hip x-rays, evaluable of hip dislocation and referral to an orthopedist.

This quality improvement protocol seeks to improve outcomes related to pain and functional decline in adults by standardizing the assessment of pain to enhance detection, classification and ultimately the treatment of functional decline and pain.

CPCHECKlist is a list of co-morbidities that are common in CP especially more severe CP. CPCHECKlist is a new adjunct assessment being developed to provide risk adjustment to studies and to enable shared decision making.

This project will describe weight by age to clinical outcomes in children with CP. The study team will explore what ias the ideal weight range for orthopedic surgery.

This study aims to understand the experiences of adults with CP and chronic low back pain, exploring barriers to effective treatment and reasons behind treatment success or failure.

This project will implement two patient reported surveys (GOAL and CPCHILD) report as an external service on CPRN to enable shared decision making at one CPRN site. This work will allow further use of these surveys during clinical care and decision making by families, persons with CP and/or providers.

This study will talk to older adults with CP to expand our understanding of the experience of older adults with CP with aging. We hope to
discover what is helpful and what is not for aging well. This information will be shared with persons with CP and will guide future research to support wellness into later adult life for persons with CP.

This study will describe the experience of low back pain and management in adults with cerebral palsy. This information will guide future studies to examine ways to decrease low back pain and treatments as needed.

This project will look at weight by age in children with CP to understand the relationship to outcomes of function and health. The relationship to weight by age to outcomes and/or complications of orthopedic surgery will also be described in children with CP. In future studies, we aim to use weight percentiles to predict outcomes across the life span in persons with CP.

This project proposes to describe the relationship of the cause of cerebral palsy to later functional skills and other problems.

This review of data in the CPRN clinical registry proposes to describe the population of children with CP who have undergone selective dorsal rhizotomy (SDR) across sites of CPRN.

We know that improving our understanding of – and treatments for – issues related to aging for adults with CP is a research priority. To develop a multicenter research program focused on these issues, we will be seeking feedback on specific research and health priorities from adults with CP, clinicians, researchers, and community leaders.

A group of active clinicians who care for adults with CP will develop a tool to characterize the pain experienced by adults which will lead to more effective treatment of pain.

Better understanding the physiological and psychological consequences of falls is relevant to the cerebral palsy (CP) community and stakeholders because frequent trips and falls are common occurrences reported by patients and families. Learning what activities or conditions contribute to falls, how individuals fall, resulting injuries, and conscious behavior modifications due of falls can improve exercise recommendations and psychology referrals (e.g., for fall anxiety, activity avoidance), provide empirical numbers to enhance clinical awareness, and help us create tools and opportunities for safer community participation

This study will examine adult satisfaction with their primary and specialty care providers for CP. It will use a pre and post measurement after an educational video has been watched to explain the importance of specialty adult care.

This project is implementing activities at three CPRN sites to support the early diagnosis of cerebral palsy. As CPRN sites have different clinical processes to diagnosis cerebral palsy, what is done at each site is specific to that site. The goal is to diagnosis cerebral palsy earlier so families have information and access to interventions and research studies.

People with cerebral palsy may sense the world around them differently (including with the senses of touch, taste, smell, vision, and hearing). We would like to know how the person in your life with cerebral palsy (either yourself or your loved one) senses the world around them and how this might be associated with that person’s functional abilities and any unintentional movements they may have. It is important for us to understand what, if any, sensory concerns people with cerebral palsy may have.

This survey based study aimed to increase the understanding of factors that contribute to social and communicative participation for children with cerebral palsy.

 The purpose of this project was to capture the views of individuals with cerebral palsy (CP) and their caregivers (CP community members) about carrying a CP diagnosis, an etiological diagnosis, or both diagnoses together. The study found that most CP community members surveyed want to know the cause of their CP and would prefer carrying both CP and etiological diagnoses together.

This project aims to collect person reported information from adults with cerebral palsy (CP) ages 18 to more than 100 years about functional changes and pain interference with aging. The goal is to enroll a large sample of adults with CP from the community in a registry with follow up.

The study team proposes to capture how much dystonia is present in children with CP ages 3 to 18 years using videos acquired over time. They also will describe how much and amount of dystonia in a group of adolescents with CP from age 16 to 21 years old. This will allow them to collect and describe the amount of dystonia severity at specific ages in people with CP from age 3 to 70 years old.

This project aims to collect person reported information from adults with cerebral palsy (CP) ages 18 to more than 100 years about functional changes and pain interference with aging. The goal is to enroll a large sample of adults with CP from the community in a registry with follow up.

This participatory action study gathered input from community members and providers to establish the leading priorities for research for dystonia in CP.

The Community Registry is powered by individuals with CP and their caregivers through surveys that are developed by CP Research Network researchers. This large data set has provided opportunities for clinicians/researchers to access to community members for future research projects as well as to learn what is important to them.

The Cerebral Palsy Clinical Registry is a database of patient characteristics, interventions and outcomes for people with CP seen at participating centers in the CP Research Network. The CP Registry is used to provide preliminary data for research studies, aid in study design, and observe practice variation in the treatment of people with CP.

Patient and parent reported outcome measures (PROMs) are used in clinical research to decide which treatments are most suitable for individual patients. For example, children with cerebral palsy (CP) are recommended major surgery, decisions about which are difficult for patients and parents. Whether these treatments are worthwhile should be judged by whether they achieve patients’ or parents’ goals. The CPCHILD and the GOAL are two such PROMs that were developed for children with CP. In this project, the CPCHILD and GOAL questionnaires will be adapted to develop electronic versions (ePROMs) that will produce summary reports for children and their parents, that includes their scores as well as the items they have identified as important goals to address.

The grip strength study seeks to establish a correlation between grip strength and body composition in cerebral palsy. People with CP are pre-disposed to lower strength and higher body fat composition which is a risk factor for chronic disease. This pilot study will test the feasibility of adding grip strength as a biomarker of body composition in the treatment of children and adults with CP.

This qualitative study sought to better understand the practice for two common interventions to reduce spasticity — chemical denervation (typically with Botulinum Toxin A) and selective dorsal rhizotomy.

This study brought together a large swath of the patient and provider community members to establish the top 16 areas for addition research in CP.

The consequences of seizures and their treatment exert influence on concurrent conditions and are best studied collectively. Epilepsy occurs in nearly half of individuals with cerebral palsy (CP), is difficult to treat, and negatively impacts patient and family quality of life.

The genetics of cerebral palsy study is funded by the National Institutes of Health with the intention of performing genomic analysis of 500 trios, the person with CP and their biological parents, to identify new genes that cause CP. Participants need to be patients of one of the participating centers and provide saliva samples through “spit kits” sent in the mail.

Consent for participation in CP Research Network Community Registry surveys.

Consent for participation in CP Research Network Community Registry surveys.

Medical History Background — this form collects basic data that is useful for finding people eligible for future studies and characterizing the community members that participate in the registry.

The following series of questions will be asking you about how you move your arms and legs, if you use equipment to move, and if you are satisfied with your movement.

The following series of questions will ask you about your pain, where it is, how bad it is, what makes it feel better and how it has impacted your life. We will also ask you about what treatments you have done, what worked, and if you use opioids.

Medical History Background — this form collects basic data that is useful for finding people eligible for future studies and characterizing the community members that participate in the registry.

The CPCHILD questionnaire assesses how parents or caregivers rate their child about various issues related to daily activities, self care, getting around, comfort, communication, social interaction and health.

The Gait Outcomes Assessment List (GOAL) is a validated measure of parent objectives for children and issues surrounding their gait. It not only gathers information about how a child functions activities of daily living but also participation. The GOAL seeks to gather how important change is each of the domains it assesses.