The Sarah Jane Brain Virtual Center of Excellence is an online ecosystem created for families of those with brain injury and the professionals who work with them. The first step in creating this ecosystem is the development of the Sarah Jane Brain Registry. The purpose of the SJB Registry is to gather information about everyone affected by PABI and then convert the anonymous statistical information into a format usable by researchers in order to determine what works and what doesn't as it relates to treating pediatric brain injuries. Personalized content within the SJB Registry will also be provided to enrolled families in order to help them better understand their condition and how to get help. Over time, the Sarah Jane Brain Virtual Center will continue to add research and service partners in order to make more opportunities available for families. There will be repeated communication with SJB Registry participants, a relationship rather than a limited engagement. Participants will be sent questionnaires at regular intervals to find out how they are doing, and what their needs are. Communication will be personalized to particular groups within the registry to facilitate research efforts over time. The SJB Registry will follow strict federal guidelines to maintain the patients' rights to confidentiality and engagement.
If you are a friend or family member of a child of young adult who had a brain injury but is now deceased, please check back in a few days for a registration type specific for your needs. Please accept our apologies for the delay and thank you for your patience.