Neurological Disorders Registry
- The Neurological Disorders Registry consists of nearly half a million individuals diagnosed with one or more neurological conditions.
- Our collaborative research team has access to this searchable database to rapidly quantify the number of patients who meet specific eligibility.
- Once a clinical trial is in place, the database can be used to recruit those patients.
The Neurological Disorders Registry is derived from the active electronic medical records (EMRs) of the five participating medical centers and thus, contains the current personal health information (PHI) of more than six million individuals. While the EMRs remain under the complete control of each respective medical center, the internal utilization of these records for a common purpose creates a HIPAA-compliant, de facto registry. The EMRs of each medical center contain this PHI in standardized formats and include common data elements and neuroimages. PHI of those patients with a specific neurological or psychiatric disorder can be accessed only after approval of the research study by the local Office of Human Subjects Protection or Internal Review Board (IRB).