What is the Central Registry?
The Central Registry* is a report of Georgians who have suffered a traumatic brain or spinal cord injury in a given year. The data includes names, addresses and other basic demographic information about people who were admitted as inpatients to the hospital, or treated and released in the hospital's emergency department (Note: regarding HIPAA, the BSITFC is not considered a covered entity).
The Commission mails resource information to those identified in the data. According to Trust Fund Executive Director Craig Young: "It's an invaluable tool because it helps us reach out to many Georgians who may not realize what resources are available - including awards from the Trust Fund itself." This is the primary use of the Registry information.
People who receive information from the Trust Fund decide for themselves whether to follow up and contact the available services listed.
The Fund also analyzes the Central Registry data to monitor incidence rates for traumatic injuries.
If I need a copy of my medical record, can I get it from the Central Registry?
No, because the Central Registry does not have – or need - a full medical record of the visit or any patient’s Social Security Number. The hospital at which you were treated should have your complete medical record for the injury event – doctor’s notes, prescriptions written, test results, etc. The Central Registry has only the demographic data we need to generate injury statistics and notify injured persons of resources. The BSITFC is not subject to HIPAA rules as it is not a covered entity.
My child received a Central Registry letter. Why wasn’t it addressed to me?
The Central Registry does not include the names of patients’ parents or guardians.
How does the Central Registry gather information about people with traumatic brain or spinal cord injuries?
Georgia hospitals are responsible for obtaining information about the injured people they treat. The Georgia Hospital Association (GHA) sends the Commission information that it has gathered from the Georgia Discharge Data Set (GDDS). The GDDS* is the program used by Georgia's Department of Public Health to collect and report state-mandated data throughout Georgia. It includes data from 100% of Georgia civilian hospitals.
For more information about the Georgia Hospital Association, please visit https://www.gha.org.
Does the Central Registry include the name of every person in Georgia who has a traumatic brain or spinal injury?
Unfortunately, no. The Commission took over administration of the Registry on July 1, 2004 and we do not have data from 2003 and earlier.
Also, the GHA data only includes people who were treated in a hospital facility for their injury. This means that anyone who went to their doctor's office, public health department, or local clinic is not included in the Registry. The Registry also does not contain information from Veteran's Administration or military hospitals.
How can I, or someone I know, be added to the Central Registry?
As of 2004, if you were treated in a hospital facility you are included in the Registry. If you were not treated by a hospital, or were injured prior to 2004, the Commission would like to add you to the Registry. Please contact us about submitting your information for the Central Registry by emailing the Commission at [email protected] .
This gives the state a better understanding of the number of Georgians with traumatic brain and spinal injuries and makes sure that you receive information on available resources in Georgia.
Why was the Registry created?
In the late 1970s, citizens in South Georgia approached legislators to discuss the fact that many teenagers with spinal cord injuries were dying from their injuries because they didn't have access to critical services. To address this, the Georgia General Assembly passed legislation in 1981 to create the Central Registry.
From its creation in 1981 until the Commission took over, the Central Registry was operated by the Division of Rehabilitation Services through its Roosevelt Warm Springs Institute for Rehabilitation.
Who else uses the Central Registry data?
Only the Brain and Spinal Injury Trust Fund Commission has access to the Central Registry. Other state agencies and outside entities may request aggregate data – how many children were injured in a particular city, how many men sustained a spinal cord injury, etc. This data is released without any identifying information.
For more information about the Central Registry, contact the Commission office at 888-233-5760 or email: [email protected]