It is 2016 and it is still unclear, due to uncoordinated and old data, what is the number of people living with spinal cord injury and disorders across the United States. Knowing how many people are out there, helps us make sure that we are providing the appropriate number of programs and services and advocacy assistance for you, your family and your caregivers.

United Spinal supports the Advancing Research for Neurological Diseases Act (S. 849) which requires the U.S. Department of Health and Human Services to establish a centralized data collection system within the Centers for Disease Control and Prevention (CDC) to collect and aggregate data on the epidemiology of neurological diseases.

The Advancing Research for Neurological Diseases Act ensures that this data will provide a foundation for evaluating and understanding aspects of neurological diseases, (both CDC and the National Institutes of Health include spinal cord injury/disease SCI/D in their categorization of neurologic diseases including multiple sclerosis, Parkinson’s disease) such as:

• The natural history of neurological diseases;
• Demographics, such as age, race, ethnicity, sex, geographic location, and family history;
• Geographic clusters of diseases;
• Diagnosis and progression markers;
• Risk factors that may be associated with certain neurological diseases;
• Disease burden;
• Outcomes measures; and
• Research for the prevention, detection, management, and development of therapies

The bill does contain privacy and security protections regarding personal information.