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 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

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

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 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

Study Name Description Type & Status