The Sarah Jane Brain Registry is currently being revamped to a new platform. If you would like to pre-register for inclusion in the new database, please enter this basic information on the right and submit. We will notify you once the new system is complete.
The Sarah Jane Brain Registry is an online ecosystem created for families of those with brain injury and the professionals who work with them.
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.
- Providing a HIPAA-compliant and highly-linked care system to facilitate case management and long-term monitoring
- Furthering and promoting research through development of a nationwide PABI registry and interoperable database across the continuum of care, fostering open collaboration for better care and research
- Empowering patients and reaching the community through interactive social media, targeted educational resources, and evidence-based training tools
- Advancing discovery speed to clinical application Integrating data to inform public policy
“If I do this, will the patient benefit?”
Millions of children will benefit from this process, and hundreds of thousands of care providers will be empowered as well.
A patient can be enrolled into the SJB Registry at any time following their injury, whether it is at the time of the injury or many years down the road.
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. The patient ultimately controls his or her own information.