The Cerebral Palsy Research Network (CPRN) has launched two new studies in its Community Registry hosted at MyCP.org. The first study, “Speech and Language Predictors of Participation for Children with Cerebral Palsy (CP),” is intended for parents or caregivers of children ages 4-17. The principal investigator, Dr. Kristen Allison of Northeastern University, was awarded the CP NOW Research CP award in November 2019 in support of creating this study. Dr. Allison hopes to enroll at least 100 participants which is conducted entirely online. The second study, “Community views on cerebral palsy diagnosis,” was developed by Dr. Bhooma Aravamuthan of Washington University, to understand the meaning and the impact of different diagnoses related to CP have on families. The survey is available to parents and caregivers for children and adults with CP 18 years and older. Both studies can be taken by signing up for MyCP.org.
The CPRN Community Registry captures data directly from members of the community through our web portal at MyCP.org. More than 600 members of the community have signed up for MyCP. Community Registry studies are de-identified so there is no personally identifying information in the studies. Many of the studies in the Community Registry are longitudinal so they track outcomes over a long time. These two new studies are single studies with no follow-on annual measures. The speech and participation study does have potential compensation in the form of a drawing for a $100 Amazon gift card though most studies do not have similar incentive. Your time participating in these studies helps CPRN advance research that would not be possible without your direct input.