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 inform change.
Click Here to Register and Take ALS Focus Surveys
Results from ALS Focus surveys are planned to be published in peer reviewed journals and other channels. All data collected is openly available and free to the entire ALS community. Survey participants will have early access to the results.
If you are already registered, login below.
If you have any difficulty while registering or completing the surveys, please contact [email protected].
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.
ALS Focus is set apart from other traditional ALS surveys!
ALS Focus is:
Click Here to Register for ALS Focus and Complete Your Demographic Information
ALS Focus is directed by people 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
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.
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.
Fill in your demographic information one time. There is an opportunity to update your information over time, such as your disease status.
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.
Once each survey is closed, participants will receive access to the results. Survey results will also be reported in peer-reviewed journals, presentations, The ALS Association blog, and more.
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.
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.
View ALS Focus Survey 1 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 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.
IMPACT ALS Poster
IMPACT ALS Blog Post
IMPACT ALS Research Article
Voice of the Patient Blog Post
Voice of the Patient Report
Thank you to our partners for their time, talent, & support to make ALS Focus a reality.
Note about the ALS Focus survey on what matters most: This survey and the [AMYOTROPHIC LATERAL SCLEROSIS- HEALTH INDEX SHORT FORM (ALS-HI-SF)] to which they relate, are owned by the University of Rochester (UNIVERSITY). Permission to use the survey and [ALS-HI-SF] is limited to use only for research purposes, as more specifically described in the Copyright License and Survey Processing Agreement with UNIVERSITY. Reproduction, translation, modification, sale or distribution of the survey or any portion of the [ALS-HI-SF] is strictly prohibited, and neither may be incorporated into any sponsored research, training or certification programs or used for any commercial purpose except with permission from UNIVERSITY and payment of applicable fees.
