The Center for Outcomes Research at the University of Massachusetts Medical School is pleased to have been selected as the Data Coordinating Center for the ALS Patient Care Database, which is a component of the ALS C.A.R.E. (Clinical Assessment, Research, and Education) Program.

The Data Coordinating Center provides data management and statistical support. Thus, we review, edit, and enter all data into a computer database, and generate and distribute quarterly reports to participating neurologists. In addition, the center will provide analytic support through the ALS C.A.R.E. Advisory Board to foster the development of scientific and educational materials designed to improve outcomes of patients with ALS.

The bylaws of the ALS C.A.R.E. Program require the Director of the Data Coordinating Center to maintain strict confidentiality of individual patient, caregiver, physician, and clinic data. Individual neurologists will have access only to their own data and pooled results of aggregate North American outcomes in the ALS Patient Care Database. All clinic-, physician-, patient-, or caregiver-specific information will be blinded in these reports and any other reports published under the auspices of the ALS C.A.R.E. Program. No clinic-, physician-, patient-, or caregiver-specific information will be released to any private, commercial, or governmental organization.

The faculty and staff of the Center for Outcomes Research look foward to working with you and the members of the ALS C.A.R.E. Advisory Board to improve outcomes for patients with ALS.

Sincerely,

Fred Anderson, PhD
Director, Center for Outcomes Research