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
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.
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.
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.
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.
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Thank you to our partners for the time, talent and support that make ALS Focus a reality.