Survey Frequently Asked Questions

Registration and survey participation

Survey participation is vital in helping researchers identify the risk factors that may cause ALS.
Survey modules are brief and include some questions about who you are, where you lived or worked, family history of ALS, and how you are coping with your disease. You will only be asked to answer Surveys 1-18 one time, with the exception of disease progression survey (see below FAQ #2).

• Your personal information is never disclosed or shared outside the Registry.
• You can do the survey modules whenever you want.
• You can do them all at once or over a period of time. There are 18 surveys available to take.
• You can elect to receive email notifications to participate on clinical trials or epidemiological studies you may be eligible for.
• You can elect to participate in the National ALS Biorepository to donate bio samples such as blood.

Survey contents

Surveys are designed to collect various aspects of person living with ALS such as demographics, lifestyle and health-related factors, environmental exposures, and ALS-associated clinical factors that may include assessment of the followings:

• Gender, race and ethnicity, education, employment status
• Smoking and alcohol history, BMI, physical activity and professional sports history, caffeine intake, history of head trauma/head-neck injury
• Occupation-and non-occupation related environmental exposures such as pesticides, chemicals, and metals, and residential history
• Disease progression questions (ALSFRS-R), Family history of neurodegenerative disease, ALS-related symptom onset, medication and assistive devices used

By taking surveys, individuals living with ALS will help provide a better picture of who gets ALS and risk factors for the disease. Although you can complete the surveys in any order, we recommend that you start with Survey 1 and complete them in order.

Below are general instructions on how to take the surveys.

Frequently asked questions regarding surveys

1. Does the Registry send reminders about completing the risk factor surveys?
   Yes, and the Registry sends survey email reminders for the following reasons:

• • If enrollees have yet to complete any survey
  • In-progress/incomplete surveys
  • Announcements of new surveys
  • Disease progression

2. How often do people receive notifications to complete the disease progression survey?
   Once the registration is complete, a Registrant will receive notifications to complete/update
   1) disease progression and/or
   2) other surveys at different time intervals.
   See Table 1 below for more information.

Table1. Timeline of email notification to complete surveys in the National ALS Registry online-portal

¹Interval from the time of enrollment at the National ALS Registry
²Notification to complete other surveys (Surveys 1-6, 8-18) are sent upon 6 months of inactivity; Non-binding to scheduled every-three-month reminder