Research i Care i Advocacy
ALS Focus

ALS Focus is a patient- and caregiver-led survey program that asks people with ALS and current and past caregivers about their needs and challenges. The goal is to learn as much as possible about individual experiences throughout the disease journey so that the whole ALS community can benefit. All data collected is de-identified and shared free of charge with the entire ALS community.

Click Here to Take ALS Focus Surveys

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Join Us – Your Participation Makes an Impact

Participate in research outside of clinical trials. You are eligible at any stage of disease. You live with the challenges of ALS every day. Share your opinions and insights on your disease journey to help inform change.

Click Here to Take ALS Focus Surveys

ALS Focus surveys are open to new and returning participants!

People living with ALS, current caregivers, and past caregivers are eligible to participate in ALS Focus surveys. If you're living with ALS, you may ask someone you trust to respond on your behalf.

Participants must be at least 18 years old and reside in the United States. Survey instructions and questions are presented in English. Surveys are conducted online.

ALS Focus has a new look! Our survey team improved how ALS Focus works so that participating in surveys is easier. Logging into ALS Focus with a password is no longer needed. Instead, we email participants with unique links to their surveys. You will see an email from [email protected]. If you participated in ALS Focus in the past, your responses continue to be de-identified and used in analysis. Responses to past surveys and new surveys are secure and anonymous. If you want to know more, view the ALS Focus Technical FAQ and Registration Instructions. If you have questions, please contact us at [email protected].

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Results from ALS Focus surveys are planned to be published in peer-reviewed journals and other channels. All de-identified data is openly available and free to the entire ALS community.

  • Register one time (will take 15 minutes) and then take surveys as they become available.
  • Once registered, surveys should take approximately 5–10 minutes to complete.
  • All open-ended questions are optional.
  • Responses are anonymous.

If you're already registered, check your email for new surveys from [email protected] or click below.

Click Here to Take ALS Focus Surveys

Need Help?

If you have any difficulty while registering or completing the surveys, please contact [email protected].

Registration Instructions

The ALS Association strives to improve ALS drug development, clinical trial design, clinical care, payment models, regulatory decisions, home health, and more. ALS Focus is a rigorous survey program that tackles these challenges by asking people living with ALS and caregivers to share information about their needs and experiences throughout the disease journey. Feedback is delivered to key decision-makers to continue the fight to improve quality of life for people impacted by the disease. Importantly, all data collected is free and open to the entire ALS community.

 

ALS Focus is Unique

ALS Focus is set apart from other traditional ALS surveys!

ALS Focus is:

  • PATIENT AND CAREGIVER LED – Each step, from identifying survey topics to reviewing survey questions, is informed by our Patient and Caregiver Advisory Committee (PCAC).
  • COLLABORATIVE – All data we collect is open and available free of charge to the entire ALS community. Data is de-identified before sharing.
  • ROBUST – To broaden the impact of your participation, data is tracked over time and combined with other research studies that use a global unique identifier (a special code for each participant), such as the National ALS Registry and clinical trials.
  • INFORMATIVE – Results are posted soon after each survey closes. Anonymous survey data are available for free.
  • TAILORED – Data is analyzed by zip code, state, or urbanicity to understand specific needs and burdens in different regions of the U.S.
  • ACTIONABLE – Data is used to inform decisions around policies and programs to strengthen care for people living with ALS and caregivers, accelerate therapy development, improve clinical trials, influence coverage and payment determinations, and more. 
  • DIFFERENT FROM THE REGISTRY – ALS Focus captures disease burden and experiences throughout the disease journey to put the opinions of people impacted by ALS at the center of ALS programs and policies. The National ALS Registry helps count people and new cases of ALS and looks to identify ALS environmental risk factors.
  • IMPACTFUL – Your participation helps maximize the voice of the ALS community to inform change and contribute to improving the lives of people living with the disease and their families.

Click Here to Take ALS Focus Surveys

 

ALS Focus is Patient and Caregiver Led

ALS Focus is directed by people living with ALS and caregivers. Each step, from identifying survey topics to reviewing survey questions, is informed by our Patient and Caregiver Advisory Committee (PCAC). We are honored to work with such a wonderful and giving group of people.

Learn More About Our Structure

 

How ALS Focus Works

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Sign Up
Sign Up

Register for ALS Focus by providing your email address and completing Registration and Demographics surveys. People living with ALS and current or past caregivers of people with ALS can participate. A proxy may participate to answer questions on behalf of a person with ALS.

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Your Privacy is Protected
Your Privacy is Protected

ALS Focus partners with Qualtrics to host surveys and securely store survey data. Qualtrics is an online platform that facilitates high-quality survey research and adheres to data privacy standards. A Neurological Global Unique Identifier (NeuroGUID) surrogate called a NeuroSTAmP™ is created for you. A NeuroSTAmP is a unique code of 12 letters and numbers that ensures survey responses are tied to a specific participant without revealing the participant’s identity. ALS Focus NeuroSTAmPs and survey responses will only be shared as de-identified. De-identified means your personal information, such as your name, will not be attached to your NeuroSTAmP or survey responses. 

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Tell Us About You
Tell Us About You

Fill in your demographic information one time. There is an opportunity to update your information over time, such as your disease status. 

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Complete Online Surveys
Complete Online Surveys

Periodically throughout the year you’ll be invited to provide information about your needs, preferences, and experiences through online questionnaires. Your time is valuable, and we aim to keep each survey as short as possible and less than 15 minutes. 

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Track Your Answers
Track Your Answers

Results are posted shortly after each survey closes. Survey results will also be reported in peer-reviewed journals, presentations, The ALS Association blog, and more.

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Fuel Discovery
Fuel Discovery

Your de-identified data will be 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 regarding your experiences, preferences, and needs.

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Accelerate Change
Accelerate Change

Your real-world datasets are critical to inform decisions, policies, and programs around clinical care, drug development, clinical trials, drug payment, and more. Together, we can improve the lives of people living with ALS and their families.

 

Learn More

See the Results

Thank you to our community members who participate in ALS Focus surveys. Results are in!

View ALS Focus Results

Surveying the ALS community has already led to important results. This includes the IMPACT ALS survey that provided a cross section of data on ALS burden for people living with the disease and their caregivers.

Over 1,500 people participated across the U.S. and it was the first time such data has been gathered to this extent across disease progression.

Data from the IMPACT ALS survey was compiled and analyzed to inform the creation of the ALS Voice of the Patient Report (ALS VoP) that was submitted to the FDA in October 2019.

The VoP is a groundbreaking assessment that gives the FDA and other stakeholders data about the everyday impact and burden the disease has on people’s daily lives, their experiences with currently available treatments, and their hopes for future ALS therapies.

The report speaks loudly and clearly on the immense unmet medical need that we are all working to confront.

The ALS Focus program will build upon data gathered from IMPACT ALS.

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IMPACT ALS Poster
IMPACT ALS Blog Post
IMPACT ALS Research Article
Voice of the Patient Blog Post
Voice of the Patient Report

Our Partners

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

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Apellis

 apellis.com

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Biogen

biogen.com

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cytokinetics

cytokinetics.com

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ionis

ionispharma.com

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ncri

massgeneral.org/ncri

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Revalesio

revalesio.com

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sanofi

sanofi.com

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