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 inform change.
The Summer 2020 survey is now open to new and returning participants!
Tell us how ALS impacts you or your family.
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.
- Register one time (will take 5 -10 minutes) and then take surveys as they become available.
- Once registered, surveys should take approximately 5 to15 minutes to complete.
- All open-ended questions are optional.
- Responses are completely anonymous.
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 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 free of charge to the entire ALS community.
- ROBUST – Data is tracked over time and combined with other research studies that uses a global unique identifier (a special code for each participant), such as the National ALS Registry and clinical trials, to broaden the impact of your participation.
- INFORMATIVE – Participants will receive access to the results after each survey closes.
- TAILORED – Data is analyzed by zip code 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 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 with ALS and their families.
ALS Focus is Patient and Caregiver Led
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.
How ALS Focus Works
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, 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.
See the Results
Thank you to our community members who participated in Survey 1 – Understanding Insurance Needs and Financial Burden. Results are in!
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.
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.