Quick Tips for Easy Implementation

Interpretation Guides | Patient Questions | Helpful Hints

About This Guide

The ALS Patient Care Database is an innovative program designed to provide health professionals with a wealth of new information about the impact of ALS on patients and caregivers and to generate outcomes data that will raise the standard of care for patients.

We greatly appreciate your willingness to take part in this important program. If you have questions as you enroll patients and complete forms, please consult this handy reference guide. For more information, see the ALS C.A.R.E. Program Internet site at www.alscare.org.

Thanks for taking part in the ALS Patient Care Database. Keep this resource handy for easy reference.

Enrolling Patients and Collecting Data

-Enroll all newly-diagnosed patients, or, while getting started, at least 1-2 patients per week.

-Enrollment of patients with later-stage disease is also encouraged.

-Data should be collected every 6 months.More frequent data collection (e.g., 3-4 month intervals) is optional.

-Place ALS Patient Care Database chart stickers on the front of charts as a reminder to fill out forms.

Getting and Using Identification Numbers

-Clinic ID numbers are assigned by the Data Coordinating Center. If you lose your clinic ID number, call the ALS Helpline.

-A single clinic/physician ID number is assigned by the Data Coordinating Center for clinics that choose to participate as a group. For clinics that choose not to aggregate their data, the Data Coordinating Center will assign a separate ID number to each physician.

-Clinics are responsible for assigning and tracking unique, confidential patient ID numbers. Many clinics find hospital ID numbers or SSNs work well as patient ID numbers, since these numbers are easily linked to the patient's other records.

-All neurologists participating in one clinic should use a central log to track patient ID numbers. This will prevent the same ID number from being allocated to 2 different patients.

-Give a plastic ALS Patient Care Database ID card to each patient at the enrollment visit. Write your clinic ID number and the patient's ID number on the card. Encourage patients to present this card each time they receive care for ALS. This will help to prevent patients from being enrolled in the database twice.

-Collect caregiver data: Since different caregivers complete forms at different visits, always have them record their initials (question #10 on the Caregiver Form).

Completing the Forms

-Record the clinic, physician, and patient ID numbers on all data forms. Be sure to record both the original enrolling and current clinic ID numbers if they're different. If you are presented with a card, use the patient ID number on the card.

-Do not photocopy data forms to make more blank forms. Use an original blank copy of the data forms for each patient visit. Keep copies of completed forms in your files in case the originals get lost in the mail or we have questions about your data.

-Right justify all numbers (e.g., ID numbers, dates, weight, height, FVC) on the data forms and fill in all bubbles, including the zeros. For example, if a patient weighs 90 lbs, shade 0 in the first column, 9 in the second column, and 0 in the third column.

-Correct dates are essential. Always double-check your forms.

-Patients and caregivers should complete forms while at the clinic:Stress the importance of completing the forms on the day of the visit.If necessary, forms can be taken home and completed.

-Allow patients and caregivers privacy from each other, other patients, and clinic staff when they are completing the forms: Privacy will help ensure candid responses.

-Do not assist patients or caregivers with forms unless they request help: If asked to help, read the questions and response options exactly as written on the form.

Do not try to interpret questions or shape responses.

-When possible, complete Health Professional Forms at the time of the visit: If necessary, complete later using clinic notes.

Other Helpful Tips

-Forced vital capacity (FVC): A recent (+/- 1 month) FVC measurement by any reliable method is acceptable.

-For additional supplies, call the Data Coordinating Center at (508) 856-2577 or fax an order form to (508) 856-5085

Need More Information?

We'll be happy to assist you with any questions you have.

ALS Help line: 508-856-1336

Fax: 508-856-5085

E-mail: als@umassmed.edu

Website: www.alscare.org