1. I took ALS Focus surveys before June 2022. Why do ALS Focus surveys look different now?
2. I took ALS Focus surveys before June 2022. What happened to my data?
3. Why can I no longer log into the ALS Focus portal?
4. What happened to my ALS Focus username and password?
5. May I continue to share an account with my caregiver or the person I care for?
6. Why do I need my own email address for ALS Focus?
7. How will my email address be used?
8. Why can’t I update my demographics survey?
9. How do I know which surveys I completed?
10. How is my ALS Focus data being used?
11. Is my ALS Focus data private?
12. Who can access my ALS Focus data?
13. How do I take ALS Focus surveys?
14. What is a NeuroSTAmP?
15. Why do I need a NeuroSTAmP to participate in ALS Focus?
16. Why am I asked for personal information to generate my NeuroSTAmP?
17. What happens to the personal information that I provide for the NeuroSTAmP
18. Why can’t I see my NeuroSTAmP?
19. The NeuroSTAmP generator is not working for me. What do I do?
20. How do I stop participating in ALS Focus?
21. What happens to my data if I stop participating in ALS Focus?
22. Who do I contact for more information on ALS Focus?

I took ALS Focus surveys before June 2022. Why do ALS Focus surveys look different now?
Our survey team improved how ALS Focus works so that participating in surveys is easier. The changes we made are based on feedback from ALS Focus participants and our Patient and Caregiver Advisory Committee. ALS Focus surveys now take place through Qualtrics, which is an online survey platform that is widely used in the research community. Using Qualtrics, we can design surveys and questions that are easy to complete, and we can generate results quickly.

Qualtrics does not require survey participants to login with a password. Instead, we use Qualtrics to email your survey links directly to you. The emails arrive from [email protected]. In short, to participate in ALS Focus, all you need is an email address.

I took ALS Focus surveys before June 2022. What happened to my data?
If you participated in ALS Focus in the past, your responses are still de-identified and used in analysis. When we transferred ALS Focus to the Qualtrics platform, your ALS Focus data rolled over with the transfer. Responses to past surveys and new surveys are still secure in our ALS Focus database.

Why can I no longer log into the ALS Focus portal?
The ALS Focus portal used before June 2022 is no longer operational. Instead, to take ALS Focus surveys, check your email for new survey links from [email protected]. Whenever new surveys are available, we will email the survey links to you directly.

What happened to my ALS Focus username and password?
Your ALS Focus username and password are no longer used for ALS Focus. Our secured database contains your old username to ensure we send you the correct surveys. Only approved research team members may access your username. Your password was never stored in the ALS Focus database and our research team is not able to access it.

May I continue to share an account with my caregiver or the person I care for?
The old ALS Focus platform allowed more than one participant to share the same account so that people with ALS and their caregivers could participate together. Both participants had to share an email address and password to log into the same account.

Everyone who participates in ALS Focus will now need their own email address to receive ALS Focus surveys. If our database shows two people shared an account with the same email address, we will email those participants with a special survey link to select a different email address for each participant.

Why do I need my own email address for ALS Focus?
We now 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 survey links for ALS Focus.

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 or contact you for any other reason.

Why can’t I update my demographics survey?
We will send you a link to complete or update your demographics survey. Periodically, we will send you a link with your demographics responses to ask if anything has changed. If you answered the ALS Focus demographics questions in the past, your data are in our database and have been de-identified for analysis.

How do I know which surveys I 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 [email protected]. We are not able to tell you your responses to maintain data privacy, but we can confirm if our database shows that you responded to a particular ALS Focus survey.

How is my ALS Focus data being 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 that researchers all over the world can use the data to generate even more results for the ALS community. Before we share ALS Focus data, we ‘de-identify’ it, meaning we do not attach your email address, name or other personal information to your responses.

Is my ALS Focus data private?
Before we share ALS Focus data, we ‘de-identify’ it, meaning we do not attach your email address, name or other personal information to your responses. The ALS Focus database is password protected, and only approved ALS Focus research team members may access it.

Who can access my ALS Focus data?
Only approved ALS Focus research team members have access to your ALS Focus data. The ALS Focus database is password protected. Data files are de-identified before sharing or analysis. ‘De-identified’ means your personal information, such as email address, is are not attached to your survey responses.

How do I take ALS Focus surveys?
Click HERE for instructions on how to register and take ALS Focus surveys.      

What is a NeuroSTAmP?
A Neurological Global Unique Identifier (NeuroGUID) surrogate called a NeuroSTAmP is assigned to each ALS Focus participant. A NeuroSTAmP is a unique code of 12 letters and numbers that ensures survey responses are tied to a specific participant without revealing the participant’s identity.

Why do I need a NeuroSTAmP to participate in ALS Focus?
Your NeuroSTAmP will help to connect your de-identified data across research studies if you participate in more than one study, such as clinical research studies, studies of medical records, or other survey platforms. These other studies will often assign NeuroSTAmPs or NeuroGUIDs to their participants, too. 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 the participant’s name, date of birth, place of birth, and sex as shown on the participant’s birth certificate. It is important to match your birth certificate information so that if you participate(d) in a different ALS study with a NeuroSTAmP or NeuroGUID, your data will line up across the two studies.

What happens to the personal information that 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. The personal information is not stored by Qualtrics or the NCRI server.

ALS Focus NeuroSTAmPs and survey responses will only be shared as de-dentified. De-identified means that your personal information, such as your name or date of birth, will not be attached 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 such possibility, as NeuroSTAmPs are uniquely generated for each participant on per study basis.

Why can’t I see my NeuroSTAmP?
NeuroSTAmPs are not attached to participants' names or other identifying information. We do not show participants their NeuroSTAmPs to ensure Focus data is de-identified to anyone who might view it, including the participant.

The NeuroSTAmP generator is not working for me. What do I do?
All NeuroSTamP question 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 may ask a person you trust to complete the registration survey on your behalf from a different computer and fill out the NeuroSTAmP questions on your behalf. After that, you will be able to take ALS Focus surveys from your own device. 

If you still face technical issues with the NeuroSTAmP apart from the ones mentioned here, please contact us at [email protected].

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. You may email [email protected] and request to have your email address removed from the ALS Focus contact list. After removing your email address from the contact list, you will no longer receive ALS Focus notifications or surveys.

What happens to my data if I stop participating in ALS Focus?
Any data that was collected from you in the course of this study will remain a part of the survey records and will not be removed. The data will be de-identified for analysis and data sharing.

Who do I contact for more information on ALS Focus?
Please contact [email protected] with any questions or comments about the ALS Focus program or surveys.