ALS Focus Registration Instructions

INSTRUCTIONS ON REGISTERING AND COMPLETING SURVEYS
Here is a step-by-step guide on how to register for ALS Focus and complete the surveys. You will need to register for a new account and add yourself as a user on your account.

We welcome people with ALS, current caregivers, and past caregivers to participate in ALS Focus surveys. To register for ALS Focus, you must be 18 years old or older and reside in the United States.

Directions: Register for a New Account

  • Step 1: Go to www.alsfocus.org

  • Step 2: On the Welcome screen, click on “New User? Sign up new account” which can be found underneath the “Login” button.

  • Step 3: On the Sign Up New Account screen, enter your email address, enter a name of your choosing for your account, and then enter a password of your choosing. Make sure to follow the password rules the bottom of this screen. After entering this information click CREATE NEW ACCOUNT (the green button at the bottom of the screen).

  • Step 4: Check your email for a message from [email protected]. In that message, click the link that says, “Click here”. This will take you to a screen saying, “E-mail is confirmed”. Click the LOGIN button on this confirmation screen.

  • Step 5: On the login screen that appears, enter your email address and your selected password (from Step 3). You are now logged into your new ALS Focus account.

Each ALS Focus account can have multiple users. For example, a person with ALS and his/her caregiver can each be users on the same account. This way, a family only needs to keep track of one account, rather than multiple accounts.

Next each person on their ALS Focus account must add themselves as a user.

Directions: Add Yourself as a User on Your Account

  • Step 1: After logging into your account, you will see a Thank You screen explaining "The next step is to add yourself as a user on your account." Click ADD USER.

  • Step 2: On the User Profile screen, add yourself as an account user by entering a name or nickname of your choosing. This name will be your username on your account. Every time you log into your ALS Focus account, you will click on this username.

  • Step 3: On the User Profile screen, answer the questions and indicate whether you are a caregiver or a person with ALS. Click SAVE USER.

  • Step 4: The next screen will say, “Any user on your account can take the ALS Focus surveys. Who will be taking the survey next?” Click Continue on the square that lists your username. [Note: On this screen you can also add other users to your account by clicking the red ADD USER button.]

  • Step 5: On the Consent screen, review the consent form and answer the questions at the bottom of the consent form.

  • Step 6: On the NeuroSTAmP* screen, enter the required information to create your unique identifier. Make sure the information you enter about yourself is accurate. This information will NOT be stored. Click GENERATE NEUROSTAMP. You will not be shown the unique identifier that is created for you.

  • Now you're ready to complete the ALS Focus surveys listed on the Survey Menu screen!

Directions: Completing the Survey

  • Step 1: On the Survey Menu screen, click About Me to answer questions on demographics.

  • Step 2: After completing the About Me survey, go back to the Survey Menu screen to take the other surveys available to you.

  • Note, we encourage you to complete the About Me survey before taking other surveys.

Directions: Logging Off

  • After completing your surveys, the easiest way to sign out of the ALS Focus Survey Portal is to close your browser window. You will be automatically signed out.

What is a NeuroSTAmP?

*A NeuroSTAmP is a type of global unique identifier (GUID). A NeuroSTAmP is a unique code of letters and numbers that deidentifies your survey responses to protect your privacy. You will not see your NeuroSTAmP. It will be hidden. People with ALS and caregivers each need their own NeuroSTAmPs. You will not be able to enter the same information for different people.

  • A person with ALS who wants to participate should enter his/her own information to create a unique identifier.

  • A current or past caregiver who wants to participate should enter his/her own information to create a unique identifier.

  • A proxy who will is filling out surveys on behalf of a person with ALS should enter information for the person with ALS to create a unique identifier for the person with ALS.

Your NeuroSTAmP will help to connect data across research studies if you participate in more than one study. Combining data from multiple studies will increase the chance for meaningful analysis and help improve our understanding of the disease and the perspectives of people with ALS, current caregivers, and past caregivers.