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
Community Attitudes on a CP Diagnosis
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.
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
Research CP
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.
Community Registry Survey: Completed
Research CP Dystonia Edition
This participatory action study gathered input from community members and providers to establish the leading priorities for research for dystonia in CP.
Community Registry Survey: Completed
Spasticity Practice Variation
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.
Qualitative Interviews: Completed
Speech and Language Predictors of Participation for Children with CP
This survey based study aimed to increase the understanding of factors that contribute to social and communicative participation for children with cerebral palsy.
Community Registry Survey: Completed
