Have questions about the National ALS Registry? This page was created to help Chapters answer any questions that PALS or others may have about the National ALS Registry and the ALS Registry website, including questions about enrollment. This information also can be found online via the FAQs found on the National ALS Registry website at www.cdc.gov/als. Questions and answers are grouped by the following topic areas:
- About the National ALS Registry
- Enrolling in the National ALS Registry
- Registry Data and Use
- National ALS Registry Web portal
If you are unable to find an answer to your question, please contact [email protected]. Updated questions and answers will be added to the FAQ as they arise.
Who created and is responsible for maintaining the registry?
The Agency for Toxic Substances and Disease Registry’s (ATSDR) created and maintains the registry. ATSDR is a federal public health agency located in Atlanta, Georgia. ATSDR has expertise in disease registries and is helping ALS researchers and doctors learn more about these conditions.
Why is the ATSDR allowed to create a registry?
In 2008, Congress mandated that ATSDR develop a registry to gather and organize information about people living with ALS. Registry Act (Public Law 110-373)
What are the goals of the registry?
The goal of the registry is to collect information that can be used to estimate the number of new cases of ALS that will be found each year. The information is being used to estimate the number of people who have ALS at a specific point in time. Registry information is also being used to better understand who gets ALS and what factors affect the disease. The information also may be used to improve how the disease is managed and how standards of care are developed and ultimately may help scientists and doctors find a treatment and possibly a cure for the disease.
What makes this registry different from other registries?
The National ALS Registry is the only registry to be mandated by Congress. It attempts to identify every person with ALS in the US. Other ALS registries do not actively try to include everyone and are not Congressionally mandated.
How will you be sure that you have as many persons with ALS as possible?
Persons with ALS who are in national databases will be added to the registry. These databases include patients covered by the Department of Veterans Affairs, Medicare, and Medicaid. We prefer that everyone also register online at www.cdc.gov/als. However, it also is important for patients to register online. Registering online is the only way that participants can take surveys that enable them to provide more information about the disease. This information is valuable for scientists to use registry data to advance the search for the cause, treatment and cure for ALS.
Where can I get more information about the registry?
Please visit the ALS Registry website at www.cdc.gov/als. You also may contact your local chapter. To obtain help or assistance, you may contact the ALS Registry via webform at https://wwwn.cdc.gov/ALS/ContactUS.aspx, via email at [email protected] or via telephone at 1-877-442-9719, from 9am-6pm ET. You also may contact The ALS Association at 1-877-444-ALSA (2572) or [email protected]
What is the purpose of the National ALS Registry?
The registry has been started to:
- describe how common Amyotrophic Lateral Sclerosis (ALS) is in the United States;
- examine risk factors, such as environmental and occupational exposures, that might be associated with the disease;
- identify factors such as age, race or ethnicity, sex, and family history that may be associated with the disease; and
- examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS.
Why should I enroll in the registry?
It is very important that all persons with ALS enroll in the National ALS Registry to help advance research into the cause and treatment of ALS and enable scientists and doctors to determine how many people are living with ALS in the United States. Even if you believe that you already may be included in the registry because you have Medicare or Veterans’ benefits, please enroll. That’s because it is important that all people with ALS complete the surveys available in the registry.
How long will the registry operate?
There is no defined period for how long the registry will operate.
Will the registry include primary lateral sclerosis (PLS) or other similar conditions?
Not at this time. Identifying characteristics for other motor neuron disorders, such as PLS, have not been established yet. It is possible that in the future the ATSDR will be able to develop methods to accurately identify persons with other motor neuron disorders and include them in the registry.
Does the portal direct people with ALS to services, research studies, organizations?
Yes, the web portal directs people with ALS to ALS Association and Muscular Dystrophy Association Chapters, ALS clinics, clinical trials, and other resources.
Does the portal authorize researchers to contact people with ALS?
No. Protecting the privacy of patients enrolled in the registry is an important requirement; therefore, the portal does not allow researchers access to information about individual patients, even their contact information.
Can people with ALS opt out of the registry?
People with ALS that are identified by the national databases will not be able to opt out; however people with ALS can opt in by registering on the web portal.
Will people with ALS be tracked over time?
Yes, people with ALS who self-enroll will be tracked through the registry’s disease progression web survey module.
How are ALS cases identified?
Criteria for identification as an ALS case differ depending on how a case is identified. Persons who self-identify as ALS cases on the web portal will answer a series of validation questions modeled on questions used for the Department of Veterans Affairs ALS Registry. Based on information learned from ALS Registry pilot studies, ATSDR has created an algorithm to identify ALS cases from existing national databases.
If I enroll via the web portal and I also am included in the information collected from the national databases, will I be counted twice?
No. The registry includes a variety of strategies to avoid duplication of records, including cross referencing between records identified through the portal and databases.
How does the registry identify those who may have passed away after enrolling?
Data collected via national databases, including Medicare, Medicaid, the VA, and the National Death Index, will help to identify those who pass away after enrolling.
Why is ATSDR developing state and metropolitan areas ALS surveillance programs?
The purpose of the state and metropolitan area ALS surveillance programs is to evaluate how complete the National ALS Registry is. Some patients will not be in the national databases. ATSDR expects that the state and metropolitan area surveillance programs will capture these people. This will help ATSDR get a better picture of who has ALS. As of April 2012, state surveillance programs are underway in Florida, New Jersey, and Texas. Metropolitan area surveillance programs are underway in Atlanta, Chicago, Detroit, Los Angeles, Philadelphia, and San Francisco.
How do the state and metro area projects feed into the National ALS Registry?
Even though the state and metropolitan area surveillance data will not directly feed into the National ALS Registry, data from both surveillance programs will be used to evaluate the completeness of the National ALS Registry.
What makes this registry different from the web site "Patients Like Me"?
The National ALS Registry is a population-based registry mandated by the United States Congress. It attempts to identify every ALS patient in the U.S. using a variety of sources, including registration. Also, the National ALS Registry collects specific risk factor information on ALS patients through brief surveys to help researchers better understand why patients get the disease. Other non-federal disease registries typically 1) are not Congressionally mandated, 2) do not ask about risk factors, 3) contain self-reported and unverified cases, 4) include multiple disease types, and 5) include patients from other countries.
How will the registry benefit research?
The registry will benefit research in several ways:
- The National ALS Registry for the first time seeks to gather comprehensive information about every ALS patient in the U.S. in a single database.
- ATSDR will analyze registry data continuously looking for environmental, genetic, and other risk factors that may play a role in the development of ALS.
- Registrants will have access to information about available clinical trials through direct links on the web portal.
- ATSDR is exploring ways to share securely limited registry data with approved researchers in the future to further promote investigating what causes ALS and how it can be treated. Such research may lead to finding a cure for that disease.
I’m signed up with my Chapter. Am I enrolled in the registry?
No, you are not enrolled in the registry just because you have signed up with your local ALS Association Chapter. While ALS Association Chapters may help people with ALS enroll in the registry, they may not directly enroll a patient. The only way to be sure you are included in the registry is to enroll yourself through the web portal.
If I have a family history of ALS, but do not have the disease, can I enroll?
No. The registry only enrolls persons with ALS.
I’ve enrolled in another registry (e.g., NINDS, VA). Should I enroll in this one too?
Yes, the National ALS Registry is different from other registries because it is the only population-based registry for the entire US.
Will anyone contact me to follow-up on my progression?
Yes, once you are enrolled, the registry will send automatic email reminders during the year encouraging people with ALS to update their information. Persons with ALS are encouraged to update their information regularly.
Is reporting of ALS cases mandatory?
Only one state in the country, Massachusetts, has mandated reporting of ALS cases. ALS is not required to be reported at the federal level.
Can I enter additional information about myself, such as places I’ve lived or chemicals I may have been exposed to?
Not at this time. However, registry scientists are evaluating plans to enable people to enter additional information that is not currently captured by the registry. In addition, scientists are working on developing new surveys to add to the registry and collect additional information. It is important to note that the data currently collected by the registry will help researchers answer questions that are not explicitly asked in any of the current surveys.
Are there plans to collect more information?
The registry is adaptable and can collect new information about the disease beyond the information it currently collects. ATSDR and ALS physicians and scientists are working on developing new surveys to add to the registry and collect additional information. It is important to note that the data currently collected by the registry may help researchers answer questions that are not explicitly asked in any of the current surveys.
Is DNA being collected?
The registry is not collecting DNA right now, but is looking at possibly expanding the registry to include DNA in the future.
What do the modules collect?
ATSDR is using the modules to collect information about possible risk factors for developing ALS and ALS progression. The current modules collect information about:
- Demographic and background information
- Occupational History, Military history
- Smoking and alcohol consumption history
- Physical activity history
- Family history
- Disease progression
Can people with ALS change/amend/update data or verify their enrollment?
Yes, patients are encouraged to update their information regularly.
Why do I have to enter part of my Social Security number to enroll in the registry online?
Because the registry, which is operated the federal Agency for Toxic Substances and Disease Registry (ATSDR), identifies cases of ALS from many different sources, including Medicare and the Veterans Administration, the registry needs to make sure people are not counted twice (e.g., once through Medicare and once through online enrollment). The only way to be sure that two people with the same or similar names are not the same person is with a partial Social Security number. The registry only asks for the last 5 digits of the Social Security number, not the entire 9 digit number. The registry has in place a number of safeguards to protect data collected, and it has a very secure web portal. Moreover, only select ATSDR scientists have access to registry data.
What if people with ALS do not have access to a computer?
If you do not have access to a computer, please contact The ALS Association or your local Chapter and we will assist persons with ALS to enroll in the registry. We can be reached toll-free at (800) 782-4747. ALS Association Chapters may assist with enrollment over the phone. However, persons with ALS enrolling in the registry must provide consent to the enrollment and must be the ones providing answers to registry questions. Questions may not be completed by a third party based on a medical or other record.
Can caregivers or physicians enroll people with ALS?
Caregivers and others may assist persons with ALS in enrolling, including over the phone; however, the person with ALS must provide consent to the enrollment and must be the one providing answers to registry questions. Questions may not be completed by a third party based on a medical or other record. Similarly, a person who has power of attorney for a patient may assist the patient with enrollment, but the patient must provide consent on the website.
Why doesn’t the registry allow family members to enroll loved ones who have passed away from ALS?
Although ATSDR would like to have details about deceased persons with ALS, there are several reasons why it’s potentially problematic to enroll those who have lost their fight to ALS. First, the family member who enrolls a deceased patient may not know or remember specific details that are asked during enrollment and/or in the risk-factor module surveys, which collect more specific information from people with ALS. Therefore, there would likely be data gaps and/or biases in registry entries. Second, most established registries (e.g., those for cancer, birth defects) start at a point in time and go forward. Allowing family members to enroll a patient who died years ago will likely introduce bias and incomplete data because not all ALS patients who passed away will have a family member to enter them into the registry. Although the ALS Registry Act charged ATSDR with developing a registry to gather and organize information about people living with ALS, the registry will identify those lost to the disease if their information came from specific national databases (i.e., Medicare, Medicaid, the Veterans Administration).
Can survivors enroll deceased loved ones?
No, only current ALS patients can enroll in the registry.
Are deceased persons included in the registry?
Yes, if their information came from specific national databases (i.e., the Center for Medicare Services or the Department of Veterans Affairs) or if they died after enrolling in the registry.
Do I tell the ALS Registry a participant has died?
It is not necessary to report a participant death to the ALS Registry. ATSDR will check death data every year. However, if you wish to provide this information, you can contact the ALS Registry System Administrator by phone (1-877-442-9719, from 9am-6pm ET) or email [email protected]. Please provide the participant’s name and the date of his/her death.
Can I register a deceased person with ALS in the National ALS Registry?
Persons who had ALS and have died cannot be registered. Only those living with ALS can register because:
- A person must consent for inclusion in the registry.
- Someone who enrolls a deceased patient may not be able to answer specific questions asked during registration or in the survey modules.
- Registries try to enroll everyone and those who are deceased might not have someone who would enroll them which will bias the registry data.
Can someone join the registry if they do not have a computer?
The only way to enroll in the registry is by computer. But the computer does not have to belong to the person with ALS. A family member, caregiver, or friend with a computer may be able to help with enrollment. Many ALS Association chapters may be able to help with enrollment. A public computer, for example in a public library, may be an option for a person who does not have a computer or an e-mail address. Many Internet services provide secure, free e-mail accounts.
Can persons diagnosed with Primary Lateral Sclerosis (PLS) join the National ALS Registry?
Only people diagnosed with ALS can register. Using the registry, we can learn more about whether it is a good tool to track other motor neuron diseases (e.g., PLS).
Do I have to consent to register in the National ALS Registry?
Yes, a person must consent to register. To see the consent form, click here.
Do I have to enroll in the registry?
No. You do not have to self-register or take any of the additional surveys that may be available. Some people will be identified because of services they receive through Medicare, Medicaid or the Department of Veterans Affairs. However, self-registering is the only way for you to provide additional information to the registry that may help scientists and doctors advance the search for the cause, treatment and cure for ALS.
Who can become a member of the registry?
The National ALS Registry is open to all persons with ALS who are citizens or legal residents of the United States.
How does the registry identify those who may have passed away after enrolling?
Data collected via national databases, including Medicare, Medicaid, the VA, and the National Death Index will help to identify those who have passed after enrolling.
Where are the data stored?
The data are stored on secured computer servers at ATSDR.
What data are collected from the national databases?
ATSDR is collecting basic demographic information and information about ALS treatment and healthcare provider visits.
Will insurers or employers have access to my data?
Protecting the privacy of the patients enrolled in the registry is an important requirement. Therefore, data in the registry are not available to insurers or employers.
Am I included in the registry?
Protecting the privacy of patients enrolled in the registry is an important requirement. Therefore, those accessing the registry cannot look up people in the registry by name. The only way to be sure you are included in the registry is to enroll yourself through the web portal.
Who else can access data?
Right now only ATSDR researchers can access the data.
Can I find out how many people are enrolled in the registry, the number of ALS cases in a state or other general information?
Not at this time. Until the data from the national databases can be linked to information from the people who have enrolled, there is no way of knowing how accurate the information about number of cases from a particular state or even in the entire country is. We know that some states have better enrollment rates than others; thus, until we can link the data from the web portal to the data from the national databases, we won’t be able to get a good picture of how many people in the U.S. or a single state have ALS.
What data are available to the public?
How can these data/this information be accessed?
Protecting the privacy of the patients enrolled in the registry is an important requirement. Therefore, data in the registry are not available to the public. Right now only ATSDR researchers can access the data. ATSDR is working on creating reports of grouped data.
Can a researcher access National ALS Registry data?
Right now researchers cannot access data in the National ALS Registry. The registry does not yet contain enough data to be useful to most researchers. As soon as enough data are available to give an accurate picture of persons with ALS in the US, ATSDR will make the data available. Before this can occur, ATSDR must join data collected through national databases (Medicare, Medicaid, and Veterans Affairs) and data collected through the online web portal. The combined data must be checked to be sure they are complete and accurate. When those steps are complete, ATSDR will let researchers look at the data.
How will the information in the registry be used?
Information in the registry will be used to describe the characteristics of people with ALS. This information can be linked with other data to describe such things as prescription use, medical care, and progression of disease. Some researchers and doctors also may ask permission to use registry data for ALS research as they work to find the cause, treatment and cure for ALS.
Who will have access to my private information?
Only scientists approved to work on the National ALS Registry can see your private data. Doctors and scientists requesting registry data will not have access to information that would identify individual participants. Any information that is published about people in the registry will be group information. It will not identify any participants.
How is my private information stored to make sure it is safe?
Some fields needed to register will be hidden to ensure the security of your data. All your data are encrypted in the registry database. Every night ATSDR moves the personal identifiable information of the people who registered that day to a secure database with no internet access.
What information about me will be in the registry?
The registry will only contain basic information about you to better characterize who has ALS such as, age, race, sex, and where you live. Other information you provide by completing the online web portal survey modules also is included in the registry.
Is there a way to increase the font size on the page?
Yes. Simply click the S, M, L, or XL buttons in the Text Size section located in the upper right corner of the page.
Will the ALS Clinic Locator work on my portable web device (e.g. iPad, Motorola XOOM, Dell Streak, or Blackberry Playbook)?
People with Android-based portable devices (e.g. Motorola XOOM, Dell Streak, or Blackberry Playbook) have to disable pop-up blockers on their web browser for the Clinic Locator to work. You can check your user manual for directions. The Clinic Locator does not currently work on iPads because the locator is Flash-based, which is not currently supported by Apple.
Will my portable web device (e.g. iPad, Motorola XOOM, Dell Streak, or Blackberry Playbook) work with the National ALS Registry web site?
Yes. Persons using portable web devices can access and join the National ALS Registry. Surveys can also be taken using these portable devices.
I cannot get the ALS Clinic Locator to work with my web browser, what should I do?
If you are using a web browser other than Internet Explorer (e.g. Google Chrome, Apple Safari, and Mozilla Firefox), make sure you have the latest version installed on your computer. Also, you will need to disable the pop-up blocker control on your web browser. Instructions for disabling the pop-up blockers can be found in the help section of your web browser.
Can I take National ALS Registry surveys if I do not use Internet Explorer web browser?
Yes. Persons with ALS can take National ALS Registry surveys with web browsers like Google Chrome, Apple Safari, or Mozilla Firefox.
Can I view the National ALS Registry web portal if I do not use Internet Explorer web browser?
Yes. Please make sure you have the latest version of Google Chrome, Apple Safari, or Mozilla Firefox installed on your computer.
I am having trouble viewing the National ALS Registry Web site in my web browser. How can I resolve this problem?
The National ALS Registry’s Web site is best viewed using Internet Explorer.
I was told that my email address was associated with another account when trying to create an account, but I have not created an account before. What should I do?
Contact the ALS Registry system administrator at https://wwwn.cdc.gov/als/ContactUs.aspx
How do I update my account information?
Update your account information by logging onto your account and clicking “Update Account” on the account homepage or on the account menu under “Account”.
How often will new risk factor surveys be available? Will I receive an update about new surveys?
ATSDR is developing new risk factor surveys to learn more about ALS. You will receive a new survey e-mail if you are taking part in the registry and have opted to receive email reminders. Only people taking part in the registry can complete surveys. If you would like to register, please go to National ALS Registry (http://www.cdc.gov/als) to enroll. You can opt-in for receiving email reminders about new surveys during the registration process or when you update your account page. ATSDR will also post new survey announcements on the registry web site. And we will let people know through social media and advocacy groups.
Except for the Disease Progression (formerly Quality of Life) survey, each survey can be taken only one time. You can take the Disease Progression survey every six months to update the progression of your disease. You can opt to get an email reminder when you can take the Disease Progression survey again. Please go to your account and update the consent to receive emails.
How should I answer a risk factor survey question if I cannot find an answer selection that applies to me?
Survey responses often are limited to the most common responses. If you cannot find an answer choice that applies to you, please select the “Other specify:” option. A text box will open next to the selection where you can type your answer. If you need more help with the risk factor survey modules, please contact the ALS Registry system administrator at https://wwwn.cdc.gov/als/ContactUs.aspx
I received an email notifying me that my registry account is about to be inactive. Why is this happening and what should I do?
This notice alerts you that you need to access your account. ATSDR has strong security policies to protect the privacy of your personal information and the agency’s data. As part of this privacy protection program, everyone who enters private data into an online ATSDR system must access their account. This helps protect the privacy of those who take part in the National ALS Registry. If your account is locked, please contact the System Administrator (https://wwwn.cdc.gov/als/ContactUs.aspx) to unlock your account. Nothing will happen to your data in the National ALS Registry, even if your account is locked.
Why do I have to reset my password every 180 days?
ATSDR has strong security policies. This protects the privacy of your personal information and the agency’s data. The privacy program at ATDSR requires everyone who enters data into the National ALS Registry to update their account every 180 days. If you do not update your password every 180 days, your account will be locked. If your account is locked, please contact the ALS Registry system administrator (https://wwwn.cdc.gov/als/ContactUs.aspx) to unlock your account. Nothing will happen to your data in the National ALS Registry, even if your account is locked.
How can I change my password?
You can change your password by logging onto your account and clicking “Change Password” on the account homepage or on the account menu under “Account.”
How do I get my username and password if I cannot speak?
The CDC cannot send a username or password via email. This security measure is in place to protect privacy. A family member or friend can assist by calling the National ALS Registry at 1-877-442-9719 (9 a.m.-6 p.m. ET).
I forgot my password. How can I retrieve it?
Your password cannot be retrieved, but it can be reset via the “Forgot your username or password” (https://wwwn.cdc.gov/als/ALSForgotUsernamePassword.aspx) page. If you have any issues resetting your password, contact the ALS Registry system administrator (https://wwwn.cdc.gov/als/ContactUs.aspx).
Is there a way to change my username?
No. The registry system does not allow for you to change your username.
I forgot my username. How can I retrieve it?
Contact the ALS Registry system administrator (https://wwwn.cdc.gov/als/ContactUs.aspx).
I am a caregiver or family member and I would like to have an account, but I have already used my email address when creating a person with ALS account for a registrant. Will I be able to create a public account using the same email address?
Yes. You can use the same email address to create both a person with ALS account and a public account. But your email address can be used only once for each type of account.
I don't have ALS. Can I create an account?
Yes. If you are not a person with ALS you can create a public account.
I would like to create a person with ALS account, but I cannot get past the validation process. Who should I contact about creating an account?
Contact the ALS Registry system administrator at https://wwwn.cdc.gov/als/ContactUs.aspx.
How does a person with ALS register that is unable to use a computer due to his/her illness?
A person with ALS must consent to take part in the registry; therefore, no one can do it for him or her. However, someone may assist the person in completing the registration process.
Who do I contact if I have problems logging into the National ALS Registry website?
You can contact the System Administrator by phone (1-877-442-9719), from 9am-6pm ET) or email at [email protected].