Frequently Asked Questions
Below you will find answers to some of the most frequently asked questions about ALS Focus. If you have questions about registration, accessing your account, data privacy or other technical issues, please see our Technical FAQs.
- Is ALS Focus a research study?
- Who can participate?
- How long do surveys take to complete?
- What kind of information is collected?
- How are survey responses used?
- Who oversees the ALS Focus survey program?
- How will my privacy be protected?
- How is ALS Focus different from the CDC’s National ALS Registry?
- Who should I contact for more information about ALS Focus?
Yes, ALS Focus is a research study. This means we use systematic research methods to collect empirical data from human subjects (i.e., survey participants), and we intend for this information to contribute to generalizable knowledge. Our research methods were reviewed by an Institutional Review Board (IRB) and received an exemption determination. This means the IRB concluded the research has no or minimal risk for participants.
ALS Focus surveys are open to anyone living with ALS and current or past caregivers. People with ALS may ask someone they trust to serve as a proxy and respond on their behalf. All participants must be at least 18 years old, live in the United States and be able to read and understand English.
Registering for ALS Focus takes about 15 minutes. After registering, most surveys take about 5–10 minutes to complete.
During the registration process, ALS Focus collects demographic information, such as age and gender. Health-related questions are also included. Participants have the chance to update their health status with each new survey. Topic-specific surveys collect firsthand experiences, preferences, insights and opinions.
The data collected through ALS Focus helps inform decisions and strengthen policies and programs focused on:
- Clinical trial design
- Care services
- Caregiver support
- Home health practices
- Regulatory actions and decision-making
- Insurance coverage and reimbursement
All data is de-identified and shared openly with the entire ALS research community for free. Personal information, such as a participant’s name, is not linked to survey responses, and participants’ identities are never shared. Learn more about how your privacy is protected below.
ALS Focus is administered by the ALS Association with support, guidance and oversight from the ALS Focus Steering Committee. The Steering Committee is made up of members of our Patient and Caregiver Advisory Committee (PCAC); representatives from the FDA; industry sponsors of the program; our partners at the Neurological Clinical Research Institute at Massachusetts General Hospital; and other academic experts. The director of the ALS Focus survey program is Sarah Parvanta, Ph.D.
ALS Focus partners with Qualtrics to host surveys and securely store survey responses. Qualtrics is known for facilitating high-quality survey research and adhering to data privacy standards. ALS Focus also partners with Massachusetts General Hospital’s Neurological Clinical Research Institute to assign a special code called a NeuroSTAmP to every ALS Focus participant. A NeuroSTAmP is a unique set of letters and numbers that links survey responses to a specific participant without revealing the participant’s identity.
All ALS Focus data is de-identified before it is analyzed and shared with the global research community. De-identified means that personal information is not attached to your NeuroSTAmP or survey responses. For more information about data privacy and NeuroSTAmPs, please see our Technical FAQs.
Information collected by the National ALS Registry is used by the Centers for Disease Control and Prevention (CDC) to estimate the number of new cases of ALS diagnosed each year and to better understand who gets the disease. Researchers also use information from the Registry to look for changes in disease patterns and to identify whether there are common risk factors among individuals diagnosed with ALS. In contrast, ALS Focus is a platform for people living with the disease and caregivers to communicate their needs, preferences and experiences as they meet the challenges of ALS throughout the disease journey.
Because these research studies are designed to answer different questions about ALS, we encourage participation in both. Using Neurological Global Unique Identifiers (NeuroGUIDs) / NeuroSTAmPs, researchers can link Registry data to ALS Focus data on a de-identified basis. Any researchers who want to use linked data must have permission from both the CDC and the ALS Association.
Please email ALSFocus@als.org with any questions or comments about the ALS Focus program or surveys.