ATLANTA, GA – Patrick Donohue, Founder of the Sarah Jane Brain Foundation, announced today the launch of the first-ever registry for people affected by brain injury. The announcement was held outside in the garden at the Intercontinental Hotel in Buckhead at 10:00 a.m.
Brain injury is the leading cause of death and disability for children and young adults (up to age 25) in the United States, and causes range from the traumatic (falls, motor vehicle accidents, sports concussions, child abuse/shaken baby syndrome, blast injury from war, gunshot wounds, blows to the head) to the non-traumatic (brain tumors, strokes, meningitis, poisoning, lack of oxygen). Speaking with Donohue at the press announcement were Marilyn Barr, Founder and Executive Director of the National Center on Shaken Baby Syndrome, and Kevin Hauser, CEO of Medefile International, Inc.
Donohue’s five-year-old daughter, Sarah Jane, was shaken when she was five days old, causing a severe traumatic brain injury. At five years old, she cannot walk, talk, or crawl. Donohue founded the Sarah Jane Brain Foundation in October 2007 to advance knowledge of the brain fifty years in the next five years by developing a seamless, standardized, evidence-based system of care that is universally accessible for all families who have a child with a brain injury.
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 was the development of the Sarah Jane Brain Registry. The purpose of the SJB Registry is to gather information about everyone affected by Pediatric Acquired Brain Injury (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.
The SJB Registry announced its launch with over 20,000 members already enrolled. Donohue noted, “After communicating with all the individuals, family members and friends of those with brain injuries who have been involved with our efforts over the last few years, as well as the professionals who work with them, over 8,000 friends and family members and 12,000 professionals were enrolled in the Registry and offered feedback. Now we are ready to announce the launch of the Beta version of the SJB Registry to the world and invite everyone affected by brain injury to join as well so that we can all work together to help those with brain injuries reach their full potential.”
A partnership with Medefile International, Inc., was also announced at the press conference. Medefile is offering its unique medical record collection and online storage services at a deeply discounted price to members of the SJB Registry.
“Medefile was created after my grandmother’s cancer diagnosis when we realized that spending time with her was more important than the hassles associated with contacting various doctor’s offices to gather and consolidate her records. We hope and expect this arrangement with the Sarah Jane Brain Foundation will ease the burden faced by other families experiencing difficult diagnoses and will allow them to concentrate on their loved ones,” stated Kevin Hauser, CEO of Medefile International Inc.
“Gathering data from the medical records of those affected by brain injury and analyzing it in a non-identifiable manner will in the future be an important part of the SJB Registry and the Virtual Center of Excellence so that researchers can determine best practices for treating children and young adults with brain injuries. In the meantime, simply having a company that will go out and actually collect your child’s medical records for you and then store them in a safe place is an invaluable and time-saving service,”stated Donohue.
The announcement was made during the 11th International Conference on Shaken Baby Syndrome / Abusive Head Trauma, which was also being held at the Intercontinental Hotel in Buckhead. Marilyn Barr, the Executive Director of the National Center on Shaken Baby Syndrome (NCSBS) and host of the conference, serves on the Advisory Board of the Sarah Jane Brain Foundation and was also present at the press announcement.
“I am honored to have been a part of the development of the Sarah Jane Brain Registry and look forward to being able to refer families who have been affected by the tragedy of brain injury to it. This is going to be a great place for families to go to find resources, support and better care for their children,” Barr stated.
Over the last 10 years the NCSBS has been providing prevention, training and research on Shaken Baby Syndrome which is a major cause of infant brain injuries.
“This invaluable database and research project will enhance our work and provide a missing link in giving parents comprehensive services,” Barr added.
For more information or to visit the SJB Registry, go to www.TheBrainProject.org.