The ALS Association

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Brian Frederick
The ALS Association
(202) 464-8612


IMPACT ALS Invites ALS Patients, Caregivers to Participate in Survey

Washington, D.C. (October 27, 2017) — IMPACT ALS (Investigating and Measuring Patient And Caregiver Trends about ALS), a collaboration between The ALS Association and three industry partners Biogen, Ionis Pharmaceuticals, and Cytokinetics, today invited people living with ALS and their caregivers to participate in a survey to help the research community better understand the concerns of people with ALS. As a part of a collaborative effort with several clinicians, IMPACT ALS aims to guide the development of new drugs and services for ALS and recently released an online survey of people with ALS and of their caregivers.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which leads to total paralysis and death, usually within two to five years of diagnosis. There is no cure.

The purpose of the IMPACT ALS survey is to identify the burden of ALS and concerns during the course of the disease, preferences for treatment, and any differences in perceptions between patients and caregivers. Only sparse information to this end is available in existing literature and, where available, is drawn from varied and small patient samples. This survey study aims to reach a broad sample of patients and caregivers. The information collected will be valuable to the research community, and is of particular interest to the Federal Drug Administration (FDA) as part of the Agency’s patient-focused drug development initiative. Results are planned to be published in peer reviewed journals and other channels, and will be made accessible to all participants.

Anyone with ALS, and anyone who is a current or past caregiver of a person with ALS is invited to participate in this survey. The goal is to collect responses from at least 200 patients and at least 200 caregivers. Anyone who would like to participate may go to to take the online survey. The survey is completely anonymous and should take about 35 minutes to complete. All open-ended questions are optional.

To date, over 650 surveys have been completed and the survey has been distributed through ALS Association chapters, ALS research ambassadors, ALS support groups, CReATe Consortium, Northeast ALS (NEALS) Consortium, ALS Therapy Development Institute (ALS TDI), and the Centers for Disease Control and Prevention (CDC) National ALS Registry. The ALS Association thanks all participants in advance for participation in this important initiative!

About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. For more information about The ALS Association, visit our website at

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