Adult Care Quality Improvement
This quality improvement protocol seeks to standardize the assessment of adults with cerebral palsy to enhance detection and treatment of functional decline and pain.
Quality Improvement: Active
Adult Medical History – General (multiple 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.
Community Registry Survey: Active
Adult Wellbeing
The following series of questions will ask about things such as how long you went to school, how you move around and communicate and the status of your health. We will also ask about the way you feel, if you have pain, and if you had surgery as a child. We are particularly interested in your viewpoint on whether you think people have treated you differently as a result of having cerebral palsy.
Community Registry Survey: Active
Caregiver Priorities & Child Health Index of Life with Disabilities-Parent Version
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.
Community Registry Survey: Active
Cerebral Palsy Clinical Registry
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.
Clinical Registry: Active
Cerebral Palsy Sensory Survey
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.
Community Registry Survey: Completed
Chronic Pain (multiple surveys)
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.
Community Registry Survey: Active
Community Attitudes on a CP Diagnosis
Please consider taking this 10-15 minute anonymous research survey asking your views on what it means to carry a cerebral palsy diagnosis. Our goal is to share the information gathered from this survey with medical providers to optimize how they diagnose cerebral palsy and related disorders.
Community Registry Survey: Completed
Consequences of Falls
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
Community Registry Survey: Completed
Dystonia Diagnosis Quality Improvement
This quality improvement protocol seeks to improve the consistency of physicians assessing children with cerebral palsy for the presence of dystonia in CP.
Quality Improvement: Active
Enhancing a Multidisciplinary Research Network for Research and Quality in Epilepsy and Cerebral Palsy
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.
Clinical Registry: Active
Functional Movement (multiple surveys)
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.
Community Registry Survey: Active
Gait Outcome Assessment List – Parent Version
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.
Community Registry Survey: Active
Genetics of Cerebral Palsy
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.
Clinical Registry: Active
Grip Strength and Body Composition
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.
Pilot study: Active
Hip Surveillance Quality Improvement
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.
Quality Improvement: Active
Intrathecal Baclofen Pump Infection Quality Improvement
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.
Quality Improvement: Active
Medical History – General (multiple 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.
Community Registry Survey: Active
MyCP Adult Community Registry Consent
Consent for participation in CP Research Network Community Registry surveys.
Community Registry Survey: Active
MyCP Parent Community Registry Consent
Consent for participation in CP Research Network Community Registry surveys.
Community Registry Survey: Active
Speech and Language Predictors of Participation for Children with CP
The following survey is part of a research study aimed to better understand factors that contribute to social and communicative participation for children with cerebral palsy. The first 120 participants will receive a $20 gift card for Amazon within 30 days of completion of the study. [Note: Please do not take this survey a second time if you initially took it based on a CP Foundation Instagram post.]
Community Registry Survey: Completed
