As centers of excellence in two related neuroimmunologic diseases, our first goal is to work towards developing a better understanding of the natural history of these diseases, thereby diagnosing and treating patients accurately and efficiently. Generating and sustaining clinical databases for multiple sclerosis (MS) and for transverse myelitis (TM) respectively is an important focus of Project RESTORE.
Database development and maintenance:
To better understand the natural history of diseases such as transverse myelitis and multiple sclerosis, clinical databases are essential to define subgroups of patients and to identify clinical features that predict response to therapy and guide the development of clinical trials.
We are the only center in existence with a complete database on all TM patients that includes blood, spinal fluid and tissue samples for future analysis. We have a large repository of CSF samples on MS patients, but much work remains to be done to further develop and maintain this database and to link it to critical clinical variables that will be followed in emerging trials.
These databases are complex and require sophisticated data analysis to extract critical clinical clues. Maintenance of these databases requires two full- time data managers.