Overview - Welcome

An Invitation

The physicians participating in The ALS C.A.R.E. Program invite you to join them in an exciting endeavor - a voluntary, physician-directed database of outcomes for ALS patients.

A Confidential Database

All physician and patient information is confidential. As a participant, you'll receive quarterly reports that include your own hospital data as well as a comparison with nationwide data. Your personal reports remain strictly confidential.

Outcomes, Quality of Care, Standards of Care, Practice Guidelines

These are key words in today's health care system. To improve quality of care we need to continually assess outcomes. The ALS C.A.R.E. Program provides a way to perform that assessment and to compare your outcomes with nationwide benchmarks.
What does that mean to you as a physician? It is an opportunity to:

  • Create standards for managing patients who have ALS
  • Participate in a national database designed by physicians
  • Collect data about your practice that can be used for marketing your practice
  • Take a proactive approach toward measuring outcomes

Contribution to Scientific Knowledge

Data provided through the database is used to promote quality of care. Information is disseminated through journal articles and by presentations at national and international meetings.

An Advisory Board of ALS Experts

Experts in the field of ALS serve on The ALS C.A.R.E. Program Advisory Board, which is chaired by Robert Miller, MD, Chair of Neurology at California Pacific Medical Center. This board oversees all aspects of this project.

Useful, Concise Data

We have tried to request the least amount of information possible, while still collecting essential data. The data forms were designed on the basis of well-established research principles, and we included a questionnaire for patients and caregivers to be sure that we have the complete picture.

Minimal Time Investment

As physicians, we understand your time constraints. Our forms are designed to take no more than 15 minutes per patient from your day. The forms can also be completed by nurses or physician assistants.

University-Based Research Support

The Center for Outcomes Research at the University of Massachusetts Medical School (UMMS) has been designated as the data coordinating center for this project. Fred Anderson, PhD, Research Professor at UMMS, is the scientific advisor for the study. Dr. Anderson is available to answer your questions related to data analysis and reports generated through the ALS Patient Care database. No fees are associated with participating in this database, which is supported by a grant from Sanofi.