ALS Focus™ is a survey program developed by and for people living with ALS and their caregivers. Through ALS Focus research, we scientifically measure the preferences, needs and experiences of people living with ALS and their caregivers in the United States. We collect this data so input from the community can inform strategies and enhance research, care and advocacy. All responses to ALS Focus surveys are de-identified and shared free of charge with researchers around the world.

Our new survey is open! Between now and May 31, share what you think matters the most when new ALS drug treatments and clinical trial designs are being developed. Your responses will help researchers, drug developers and policymakers better understand the needs and desires of the ALS community to shape future research efforts. You do not need to have any experience with clinical trials or drug treatments to participate. 

You live with ALS every day. Share your experiences and insights to help inform change.

Who Can Participate?

To take part in ALS Focus, you need to be:

Living with ALS or a current or past caregiver of someone living with ALS. If needed, people living with ALS can ask someone they trust to respond on their behalf.
At least 18 years old.
Located in the United States.
Able to understand and respond to survey instructions and questions in English.

How ALS Focus Works

Sign Up

Click here to register for ALS Focus using your email address. If you're living with ALS, you can ask someone you trust to respond on your behalf.

Check Your Email

Within a few minutes, you will receive an email from ALSFocus@als.org. This message will contain a unique link to your ALS Focus Registration Survey. After completing the Registration Survey, eligible participants should fill in the Demographic Survey to finish the registration process. Once you’re registered, new surveys will be sent to the email address you provided as soon as they are available.

Remain Anonymous

During registration, a unique code of 12 letters and numbers called a NeuroSTAmP will be created for you. However, you will not see your NeuroSTAmP code; it will be hidden. This code ensures survey responses are linked to a specific participant without revealing that person’s identity. This means your personal information, such as your name, will not be linked to your survey responses. 

Complete Online Surveys

You’ll periodically be invited via email to provide information about your needs, preferences and experiences through online questionnaires. Your time is valuable, so we aim to keep each survey as short as possible. Most surveys take about 5–10 minutes to complete. All survey instructions and questions are presented in English.

See the Results

Result summaries are posted on our website as soon as possible after each survey closes and are reported in peer-reviewed journals, conference presentations and more.

Fuel Discovery

Your de-identified data is made available to researchers worldwide free of charge. When combined with information from other participants, this robust and unique dataset can provide invaluable information to researchers about the experiences, preferences and needs of people living with ALS.

Accelerate Change

Your lived experience is critical to inform decisions about policies and programs that will strengthen care for people living with ALS, provide support for caregivers, advance therapy development, improve clinical trials, influence coverage and payment determinations, and more. Together, we can make ALS a livable disease for everyone, everywhere.

GeT Started

Need Help?

If you are having trouble registering for ALS Focus or completing the surveys, please see our Technical FAQs for assistance. You can also email us at ALSFocus@als.org.