The ALS Association
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Bringing the perspectives of people with ALS and their caregivers to the forefront of research, care, and advocacy.

ALS Focus is a survey program that captures the experiences and perspectives of people with ALS and their caregivers, putting the preferences of people affected by ALS at the center of ALS decision making.

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Bringing the perspectives of people with ALS and their caregivers to the forefront of research, care, and advocacy.

ALS Focus is a survey program that captures the experiences and perspectives of people with ALS and their caregivers, putting the preferences of people affected by ALS at the center of ALS decision making.

Join Us – Signing Up and Participating 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 insights to inform change.

Participate in the first ALS Focus survey about Insurance Needs and Financial Burden

Completed Survey closes: March 10, 2020

Take the Survey

The goals of this survey are to better understand the type of insurance people with ALS have, if their insurance fits their needs, and to identify coverage gaps.

Information from this survey will help us fight for access to care and financial security for people with ALS and their families.

Results from this survey are planned to be published in a peer reviewed journal and other channels. All data collected is openly available and free to the entire ALS community. Survey participants can view their survey answers in comparison to all who participate.

  • Please complete each question to the best of your ability.
  • Once registered, the survey should take approximately 15 minutes to complete.
  • All open-ended questions are optional.
  • Responses are completely anonymous.

If you have any difficulty while completing the survey, please contact ALSFocus@alsa-national.org.

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 with ALS and caregivers 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 with ALS. Importantly, all data collected is free and open to the entire ALS community.

The Information You Share Makes an Impact

  • Researchers around the world will have open access to the data for free.
  • Your data is tracked over time and can be combined with other studies and clinical trials forming a robust and diverse dataset.
  • Your data is ACTIONABLE and will be used to inform decisions and strengthen programs and policies around:
      • Drug Development
      • Clinical Trial Design
      • Regulatory Review
      • Drug Payment and Reimbursement
      • Clinical Care
      • Home Health, and more
  • Your participation helps maximize the ALS community voice to inform change and improvements in the lives of people with ALS and their families.

Log-in to Track Your Results

  • Researchers around the world will have open access to the data for free.
  • Your data is tracked over time and can be combined with other studies and clinical trials forming a robust and diverse dataset.
  • Your data is ACTIONABLE and will be used to inform decisions and strengthen programs and policies around:
      • Drug Development
      • Clinical Trial Design
      • Regulatory Review
      • Drug Payment and Reimbursement
      • Clinical Care
      • Home Health, and more
  • Your participation helps maximize the ALS community voice to inform change and improvements in the lives of people with ALS and their families.

Log-in to Track Your Results

How ALS Focus Works

Sign Up

Register on the ALS Focus Survey portal by providing your email address and setting a password. People 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.

Your Privacy is Protected

A global unique identifier (GUID) is created to de-identify you. All identifiable information, data, and findings are safeguarded by the highest privacy standards using the GUID. Data from studies which also use a GUID, such as the National ALS Registry, natural history studies, and clinical trials can be combined and analyzed over time. All data is stored in NeuroBANK™ through Neurological Clinical Research Institute at Massachusetts General Hospital.

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.

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.

Track Your Answers

Once each survey is closed, you can log into the portal and view your responses in comparison to other survey participants. Survey results will be reported in peer reviewed journals, presentations, The ALS Association blog, and more.

Fuel Discovery

Your de-identified data will be made available to researchers worldwide for free. When combined with information from other participants, this robust and unique dataset can provide invaluable information to researchers regarding your experiences, preferences, and needs.

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 with ALS and their families.

See the 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 with ALS 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 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.

Check back here for ALS Focus data after the first survey closes.

ALS Focus Structure

As the leading ALS patient advocacy organization, The ALS Association has the credibility, authenticity, and experience to move this important, collaborative program forward. The Association is perfectly positioned to bring a wide array of stakeholders together, including industry, academics, government, and most importantly people with ALS and their caregivers to make a meaningful impact on ALS drug and product development, clinical trials, and care.

Learn More

Our Partners

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

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