Patient Questions

Interpretation Guides | Patient Questions | Helpful Hints

What is the ALS C.A.R.E. Program?

The ALS Clinical Assessment, Research, and Education (ALS C.A.R.E.) Program was established by an Advisory Board of neurologists, other health care professionals, and ALS experts. The Program oversees projects that help doctors learn what causes ALS and develop new and effective ways to manage the care of people with ALS.

What is the ALS Patient Care Database?

The ALS Patient Care Database collects information from people with ALS, their doctors, and caregivers. Specially designed forms are filled out by you, your doctor, and, whenever possible, your caregiver. These forms ask for information about how ALS has affected you physically, emotionally, and financially, as well as the types of medications you are using. This information will lead to improved patient care and greater understanding of ALS.

How often should I fill out the data collection forms?

You should fill out a Patient Form at intervals of three to six months. If you have a regular caregiver and this person accompanies you on your visit, he or she should fill out a Caregiver Form. A caregiver may be a family member, friend, or paid attendant. You will be asked to answer the same questions at each visit. Although you may find it frustrating to be asked the same questions, your answers provide critical information to help us learn what factors correlate with improved quality of life.

Can I take the form home to fill out?

You should fill out the form at your neurologist's office. This is because some of the questions relate to how you feel on that particular day. If you need help completing the form, you may ask a staff member for assistance.

Will the information be kept confidential?

Absolutely. Only your neurologist and his staff have access to data.

How can I be completely honest with my answers if I know my neurologist and his or her staff may see them?

It is important that all participants provide truthful answers. Some of the questions on the Patient Form ask about your level of satisfaction with your care. Rest assured that your neurologist wants you to answer all questions as honestly as possible. Not only is it important for neurologists to know how the disease affects people physically and emotionally, but they also want to know if there are any ways that they can improve the way they care for you. Your caregiver(s) should also complete the Caregiver Form as honestly as possible. You should reassure them that you will not ask to see their answers.

If you have any further questions about the ALS C.A.R.E. Program and ALS Patient Care Database, please ask your neurologist.