Today, The ALS Association launched the ALS Focus survey program. The goal is to recruit people living with ALS and their caregivers to capture their experiences and preferences. Data will be collected in a scientifically rigorous way through quarterly surveys. ALS Focus will provide a deep and evolving understanding of disease burden and experiences of people with ALS and their caregivers.
The program is a stakeholder driven and collaborative program run by people with ALS, caregivers, academics, industry, government, and ALS Association leadership. Together, they will ensure a unified and truly representative “voice” for the ALS community. This information is critical to ensure that the voice of people living with the disease directly informs research, clinical, regulatory, and drug company decisions.
Currently, very limited information in existing literature is drawn from people experiencing the disease in a direct and personal way. The information that does exist is rarely drawn from broad and diverse patient communities. The ALS Focus survey will ensure that a complete spectrum of experiences and perspectives are available across the progression of disease. This information will be used to educate and inspire decisions to alleviate the many burdens of ALS on people living with the disease, their families, and their caregivers.
Survey results will be published in the Association blog, presentations, and peer-reviewed journals. Importantly, all data will be made accessible to researchers, drug developers, and companies all over the world for free.
All members will have access to their own data and can compare their answers to other participants in the ALS Focus survey portal. Participant identities will not be shared. Identifying information is protected by the highest privacy standards and housed at NeuroBANK™ at the Neurological Clinical Research Institute at Massachusetts General Hospital. Also, once registered, members will only have to fill out their demographic information one time, helping to avoid “respondent fatigue”.
Participate in the first ALS Focus survey about
INSURANCE NEEDS AND FINANCIAL BURDEN
Information collected will provide a deeper understanding on the insurance needs and financial burden of people with ALS and caregivers so that we can better fight for access to care and financial security.
ALS Focus can only live up to its promise with the participation of many respondents. Please join us in this powerful new effort to understand and quantify the ALS experience in a way that can strengthen future ALS programs and policies. To participate in the ALS Focus survey program, click here. For more information about ALS Focus, please visit: www.alsa.org/ALSFocus