What Is Qualtrics? 

Qualtrics is an online platform that facilitates high-quality survey research. ALS Focus partners with Qualtrics to host surveys and securely store survey data. 

How Do I Register for ALS Focus? 

Click here to start the registration process. You will need to answer the questions and provide your email address. After that, you should receive an email from ALSFocus@als.org. This email will contain a unique link to your ALS Focus Registration Survey. After completing the Registration Survey, eligible participants may take the Demographics Survey. Your registration is complete after taking the Demographics Survey. 

Why Do I Need My Own Email Address to Register for ALS Focus? 

We email unique survey links to each ALS Focus participant. Only one person may use each survey link. Everyone needs their own email address to receive their unique ALS Focus survey links. 

How Can I Check to See if I’ve Already Registered for ALS Focus? 

Click here to go to ALS Focus’s online survey platform. You will need to answer the questions and provide your email address to determine if you have already registered for ALS Focus. 

How Do I Take ALS Focus Surveys? 

Once you have registered for ALS Focus, survey links will be emailed to you directly from ALSFocus@als.org. You can also participate in any open surveys by visiting the ALS Focus webpage and clicking on the red “Take ALS Focus Surveys” button. 

How Do I Know Which Surveys I’ve Completed? 

Anytime you answer a survey question, your response is automatically stored in our database. If you want to know which surveys you have completed, please contact us at ALSFocus@als.org. We are not able to tell you your responses to maintain data privacy, but we can confirm if our database shows you participated in a specific ALS Focus survey. 

Why Can’t I Update My Responses to the Demographics Survey? 

If you have completed the ALS Focus Demographics Survey, your responses are saved in our database, and they have been de-identified for analysis. This means your responses are no longer linked to your name or other identifying information. Periodically, we will email you a link and ask you to update your demographic information if anything has changed. If you would like to update your demographic information, please email ALSFocus@als.org

How Will My Email Address Be Used? 

The ALS Focus research team will send ALS Focus surveys and notifications to your email address. We will not use your email address to contact you for any other reason. If you would like to receive other information from the ALS Association in addition to ALS Focus updates, you can sign up here

Is My ALS Focus Data Private? 

Before we share ALS Focus data, we “de-identify” it, meaning we remove any connection between your email address, name or other personal information and your responses. The ALS Focus database is password protected, and only approved ALS Focus research team members may access it. 

How Will My ALS Focus Responses Be Used? 

When we analyze ALS Focus data, we combine your survey responses with responses from all other survey participants. We analyze this data as a whole to generate counts, percentages and other statistics. ALS Focus data are also shared with the public for free so researchers all over the world can use it to generate even more results for the ALS community. Before we share ALS Focus data, we “de-identify” it, meaning we remove any connection between your email address, name or other personal information and your responses. 

Who Can Access My ALS Focus Data? 

The ALS Focus database is password protected, and only approved ALS Focus research team members have access. Data files are de-identified before sharing or analysis. De-identified means your personal information, such as your name or email address, is not connected to your survey responses. 

What is a NeuroSTAmP? 

A NeuroSTAmP is a unique code of 12 letters and numbers that ensures survey responses are tied to a specific participant without revealing that person’s identity. A NeuroSTAmP acts as a Neurological Global Unique Identifier (NeuroGUID) surrogate. All participants are assigned a NeuroSTAmP when they register for ALS Focus. 

Why Do I Need a NeuroSTAmP to Participate in ALS Focus? 

Your NeuroSTAmP will help connect your de-identified data across research studies if you participate in more than one. This could include clinical trials, studies of medical records, the CDC’s National ALS Registry or other surveys. These other studies will often assign NeuroSTAmPs or NeuroGUIDs to their participants as well. Combining data from multiple studies will increase the chance for meaningful analysis and help improve our understanding of the disease and the perspectives of people with ALS, current caregivers and past caregivers. 

Why Am I Asked for Personal Information to Generate My NeuroSTAmP? 

A NeuroSTAmP is generated based on information typically found on your birth certificate: your name, date of birth, place of birth and sex at birth. This unique combination of information ensures the NeuroSTAmP is unique to one person. It is important to use this information to create a NeuroSTAmP so that if you participate(d) in a different ALS study with a NeuroSTAmP or NeuroGUID, your de-identified data can be connected across the studies. 

What Happens to the Personal Information I Provide for the NeuroSTAmP? 

The personal information you enter is encrypted and sent to a secure server at Massachusetts General Hospital’s Neurological Clinical Research Institute (NCRI) where the NeuroSTAmP is generated. The personal information is then automatically deleted from the Qualtrics database. Your personal information is not stored by Qualtrics or on the NCRI server. 

ALS Focus NeuroSTAmPs and survey responses will only be shared as de-identified information. De-identified means that your personal information, such as your name or date of birth, will not be connected to your NeuroSTAmP or survey responses. While it may be possible for a researcher in another study that you took part in to identify you if the other study used the same global unique identifier, the usage of the NeuroSTAmP technology minimizes this possibility, as NeuroSTAmPs are uniquely generated for each participant for each study. 

Why Can’t I See My NeuroSTAmP? 

NeuroSTAmPs are not attached to a participant's name or other identifying information when we share or analyze ALS Focus data. We do not show participants their NeuroSTAmPs to ensure ALS Focus data remains de-identified to anyone who might view it, including the person who submitted it. 

The NeuroSTAmP Generator Is Not Working for Me. What Do I Do? 

All NeuroSTamP questions must be completed to generate a NeuroSTAmP. These questions are first name, middle name (if you have one), last name, date of birth, country of birth, city of birth and sex at birth. Please note: It is not possible to generate a NeuroSTAmP more than once for the same person. 

Occasionally, the NeuroSTAmP generator has compatibility issues with some computer-assistive devices like eye gaze or EZ Keys. If you use one of these devices and experience a problem generating your NeuroSTAmP, you can ask a person you trust to complete the Registration Survey on your behalf from a different computer, including filling out the NeuroSTAmP questions. After that, you will be able to take ALS Focus surveys using your own device. If you continue to have technical issues with the NeuroSTAmP generator, please email ALSFocus@als.org

How Do I Stop Participating in ALS Focus? 

Your participation in any ALS Focus survey is voluntary. If you decide to take part in this study, you may stop participating in surveys at any time. To have your email address removed from the ALS Focus contact list, please email ALSFocus@als.org. After your email address is removed from the contact list, you will no longer receive ALS Focus notifications or survey links. 

What Happens to My Data if I Stop Participating in ALS Focus? 

Any information collected from you during this study will remain part of the survey records and will not be removed. All data is de-identified for analysis and sharing. 

Who Should I Contact for More Information about ALS Focus? 

Please email ALSFocus@als.org with any questions or comments about the ALS Focus program or surveys. 

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