The Ontogeny of Fidgety Movements in Infants At High-Risk of Cerebral Palsy

Research teams at Northwestern (Prentice), University of Sydney, Fondazione IRCCS Stella Maris, Cerebral Palsy Alliance (CPA) and Murdoch Children's Research Institute (MCRI) will be collecting data in the same manner using the Baby Moves app with the inclusion and exclusion criteria above. The data from the Baby Moves app will be temporarily stored in a common REDcap database at the Murdoch Children's Research Institute (MCRI) with all sites included. The MCRI has all necessary approvals in place to host the videos. Video files from Prentice and Lurie will be transferred to a common REDCap Database at Northwestern. Other sites (University of Sydney, MCRI, Stella Maris, CPA), will have their own REDCap databases where the data is stored and managed. The research teams at these sites will be responsible for recruiting and consenting subjects. All sites (except Prentice) will seek IRB approval from their respective sites.

Study design: Prospectively recruited cohort study.

Study procedures:

Eligible families will be identified using the Electronic Data Warehouse (Prentice), through Data Analytics and Reporting (DAR) Lurie, the electronic medical record platform EPIC, or through recruitment on social media websites and family advocacy websites. Families will be contacted via email and/or text message and will have the option to enroll through electronic consent (econsent) in order to minimize in-person contact. Participating families will be able to enroll online using REDCap. If the family has questions about enrollment or the consent form, they will be able to notify a member of the study team, using a survey form on REDCap. A member of the research team can contact the family by phone to provide information and answer questions about participating in the study. Participating families will then receive directions on the phone on how to use and download the Baby Moves app on their smartphones.

Participating families will download the Baby Moves app on their smartphones after enrollment. A member of the research team will register the infant into the study database, using a study ID, infant birth date, and infant due date. The participating families may watch a 3-minute demonstration video on use of the app and proper filming technique.