Amyotrophic Lateral Sclerosis

Frequently Asked Questions

Questions About ALS

What is ALS?
What causes ALS?
Is ALS linked to the environment?
How many people with ALS have been identified in the United States?
Is ALS equally common among men and women?
Is ALS related to age?
How long do people with ALS live?
Can ALS be inherited?
Is familial ALS equally common among men and women?
How long do people with familial ALS live?
Do clusters of ALS possibly exist? (I have been told by the doctor that I have ALS. Several other people from my town/school/ community/neighborhood have also been told by their doctor that they have ALS. Could these cases of ALS all be related?)
What are the problems with studying possible clusters of ALS?
What are motor neuron (nerve cell) diseases?
What is MND prognosis?
Where can I get more information about ALS?
Where can I find information on clinical trials?

Questions About the ALS Registry

What is the National ALS Registry?
Why was the ALS registry created?
Who created and is responsible for maintaining the registry?
Why are you allowed to create a registry?
What are the goals of the registry?
What makes this registry different than other registries?
Who is paying for the registry?
Who can become a member of the registry?
Do I have to take part in the registry?
Do I have to consent to register in the National ALS Registry?
Can persons diagnosed with Primary Lateral Sclerosis (PLS) join the National ALS Registry?
Can someone join the registry if they do not have a computer?
What is ATSDR doing to encourage people with ALS to join the Registry?
Where can I get more information about joining the Registry?
What information about me will be in the registry?
Why is it necessary to provide my Social Security Number (SSN) when registering in the National ALS Registry?
How is my private information stored to make sure it is safe?
Who will have access to my private information?
How will the information in the registry be used?
Can a researcher access National ALS Registry data?
How will you be sure that you have as many persons with ALS as possible?
Can I register a deceased person with ALS in the National ALS Registry?
Do I tell the ALS Registry a participant has died?
Where can I get more information about the registry?
How should I answer a risk factor survey question if I cannot find an answer selection that applies to me?
How often will new risk factor surveys be available? Will I receive an update about new surveys?
Why should I complete the new risk factor surveys?
How can I take the new risk factor surveys?
Should I complete the other surveys before taking the new risk factor surveys?
What do the other risk factor surveys ask about?
Can I take surveys more than once?

Questions About ALS

• What is ALS?
  ALS is a disease that affects the nerve cells in both the upper and lower parts of the body. This disease causes the nerve cells to stop working and die. The nerves lose the ability to trigger specific muscles, which causes the muscles to become weak and leads to paralysis.
• What causes ALS?
  No one knows what causes most cases of ALS. Scientists have been studying many factors that could be linked with ALS, such as heredity and environmental exposures. Other scientists have looked at diet or injury. No cause has been found for most cases of ALS. In the future, scientists may find that many factors together cause ALS.
• Is ALS linked to the environment?
  Health studies have not found definite environmental factors that are linked with either ALS or other MNDs. Some studies suggested a possible link with exposure to heavy metals (e.g., lead and mercury). Other studies suggested a link with exposure to trace elements, solvents, radiation, and agricultural chemicals. No confirmed link was found with infections, diet, physical activity, and injury.
• How many people with ALS have been identified in the United States?
  Although no one knows for sure, reports suggest less than 20,000 people in the United States have ALS; every year about 5,000 people are told by their doctor that they have the disease. Because no records on ALS have been kept throughout the country, it is hard to estimate the number of ALS cases in the United States. CDC does not require doctors to report ALS cases.
• Is ALS equally common among men and women?
  ALS is slightly more common in men than women, but recent studies suggest that this difference is decreasing over time. Familial ALS is equally common in men and women.
• Is ALS related to age?
  ALS is age related; most people with ALS find out they have it when they are between 55 and 75 years of age.
• How long do people with ALS live?
  Most people live from 3 to 5 years after symptoms develop. How long a person lives with ALS seems to be related to age; people who are younger when the illness starts live slightly longer.
• Can ALS be inherited?
  About 5–10% of ALS cases occur within families. This is called familial ALS and it means that two or more people in a family have ALS. These cases are caused by several inherited factors. The most common is in a gene called SOD1.
• Is familial ALS equally common among men and women?
  Familial ALS is found equally among men and women.
• How long do people with familial ALS live?
  People with familial ALS usually do not fare as well as a person with ALS who are not related, and typically live only one to two years after symptoms appear.
• Do clusters of ALS possibly exist? (I have been told by the doctor that I have ALS. Several other people from my town/school/ community/neighborhood have also been told by their doctor that they have ALS. Could these cases of ALS all be related?)
  It is unknown whether clusters of ALS exist. Although it is possible that cases of ALS are related, studying clusters does not help when trying to determine what factors cause or trigger ALS. While ATSDR does not specifically conduct cluster investigations, suspected clusters of the disease have made it possible to conduct activities to identify the number of ALS cases in selected areas and the possible related environmental factors.
• What are the problems with studying possible clusters of ALS?
  The cause of most cases of ALS is unknown so we don’t know what to look for in a person’s past. We do not have current or complete data on the number of people with ALS. As a result, we cannot determine the “normal” or “expected” number of cases among a group of people or in a specific area. The expected number of cases of a disease is often found in an existing disease registry, as with cancer. However, there are no registries or ongoing tracking efforts for ALS in the United States. The small number of cases in a possible cluster limits the ability to tell the difference between the number of cases that would occur naturally by chance and a number of cases that is greater than would be expected. Studies with large numbers of people are needed to determine the causes of such a disease.
• What are motor neuron (nerve cell) diseases?
  ALS is one of a group of conditions known as motor neuron diseases (MNDs). ALS affects nerve cells for muscles of both the upper and lower body. ALS accounts for 85 percent of MND cases. Other MNDs affect nerve cells for muscles of either the upper or lower body. Other MNDs include progressive muscular atrophy, progressive bulbar palsy, and primary lateral sclerosis.
• What is MND prognosis?
  Eighty-five percent of people with an MND have ALS. Most persons who are first diagnosed with progressive muscular atrophy, progressive bulbar palsy, or primary lateral sclerosis will develop problems with nerve cells for both upper and lower body muscles. The person will then be told they have ALS.
• Where can I get more information about ALS?
  Please visit our Resource Links page for other ALS related websites.
• Where can I find information on clinical trials?
  The National Institutes of Health, a government agency, has a list of clinical trials. Go to the "Clinical Trials" web site to find a list of federally and privately supported clinical trials in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may take part, locations, and phone numbers for more details. Use the "ALS Clinical Trials" web site for clinical trials specifically related to ALS.

Questions About the ALS Registry

• What is the National ALS Registry?
  In 2009, the federal Agency for Toxic Substances and Disease Registry (ATSDR) started the congressionally mandated National ALS Registry to collect and analyze data on people with ALS in the U.S. In October 2010, people living with ALS in the U.S. could begin enrolling in the Registry via an online portal.
• Why was the ALS registry created?
  The registry was created as a tool to help scientists better understand who gets ALS.
• Who created and is responsible for maintaining the registry?
  ATSDR’s Division of Health Studies created and maintains the registry. ATSDR is a federal public health agency located in Atlanta, Georgia. ATSDR maintains several disease registries to help scientists and other researchers learn more about these conditions.
• Why are you allowed to create a registry?
  In 2008, Congress mandated that ATSDR develop a registry to gather and organize information about people living with ALS. ALS Registry Act (Public Law 110-373).
• What are the goals of the registry?
  The goals of the registry are 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 may be used also to improve how the disease is managed and how standards of care are developed.
• What makes this registry different than other registries?
  The National ALS Registry is the only registry 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.
• Who is paying for the registry?
  The federal government is paying for the registry.
• Who can become a member of the registry?
  The National ALS Registry is open to all people with ALS who are citizens or legal residents of the United States.
• Do I have to take part in the registry?
  No. Some people will be identified because of services they receive, however, you do not have to identify yourself or take any of the additional surveys that may be available.
• 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 National ALS Registry Consent Form
• 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).
• 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 ALSA 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.
• What is ATSDR doing to encourage people with ALS to join the Registry?
  ATSDR is working closely with ALS advocacy and support groups, researchers, and healthcare professionals to encourage people living with ALS to join the Registry.
• Where can I get more information about joining the Registry?
  You can find out more about the National ALS Registry online at www.cdc.gov/als. You can call us toll-free at 1-877-442-9719. You can also learn about the Registry through the local chapter of an ALS advocacy or support group:
  • The ALS Association (www.alsa.org)
  • The Muscular Dystrophy Association (www.mda.org)
  • The Les Turner ALS Foundation (www.lesturnerals.org)

• 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.
• Why is it necessary to provide my Social Security Number (SSN) when registering in the National ALS Registry?
  We require the last five digits of your SSN to make sure you are counted only one time. ATSDR uses the partial SSNs to compare cases in the web portal with those in the large national databases. Only approved staff working on the National ALS Registry can see your information. This data can only be used for official business.
• 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 we move the personal identifiable information (PII) of the people who registered that day to a secure database with no internet access.
• 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 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 may ask permission to identify people to contact to ask about taking part in specific research studies.
• 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.The National ALS Registry contains data both from national databases such as Medicare and from persons with ALS who register. For the data to be most useful, the two sets of information need to be connected. Typically, two years elapse from the time a person receives an ALS diagnosis to the time their information from the national databases comes to the Registry. Persons with ALS only began registering in October, 2010. Because of the time lag, right now the national databases do not include most of the persons who registered.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 the two types of data. 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. ATSDR will post updates on the National ALS Registry web site.
• How will you be sure that you have as many persons with ALS as possible?
  Person with ALS who are in national databases will be added to the registry. These databases include patients covered by the Veterans Administration, Medicare, and Medicaid. We prefer that everyone also registers. Registering is the only way that participants can take surveys.
• Can I register a deceased person with ALS in the National ALS Registry?
  People 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.

• Do I tell the ALS Registry a participant has died?
  It is not necessary to report a participant death to the ALS Registry. We will check death data every year. However, if you wish to provide this information, you can contact the System Administrator by phone (1-877-442-9719, from 8am-5pm ET) or email ALSSystemAdmin@cdc.gov. Please provide the participant’s name and the date of his/her death.
• Where can I get more information about the registry?
  Please visit our About Registry page.
• 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 System Administrator.
• 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 to enroll. You can opt-in for receiving email reminders about new surveys during the registration process or when you update your account page. We 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.
• Why should I complete the new risk factor surveys?
  The new risk factor surveys will help increase the information available on ALS and make the Registry more useful to researchers. The more that persons with ALS complete the risk-factor surveys, the more accurate and complete the information will be.
• How can I take the new risk factor surveys?
  Risk factor surveys can only be completed by persons with ALS who are enrolled in the Registry
  • If you have not registered, go to www.cdc.gov/als. To register and to take the risk factor surveys, first click on the ‘JOIN THE REGISTRY‘ button.
  • If you have already registered, go to www.cdc.gov/als and log in. Once logged in, click the ‘TAKE AVAILABLE SURVEYS‘ button.
• Should I complete the other surveys before taking the new risk factor surveys?
  You are encouraged to take all of the risk factor surveys, whether new or old. However, there is not a requirement regarding the order of completing the risk factor surveys.
• What do the other risk factor surveys ask about?
  The current surveys ask questions about things like your age, sex, race, family history, job, and physical activity.
• Can I take surveys more than once?
  Except for the Disease Progression (formerly known as the Quality of Life) survey, each survey can be taken only one time. If you registered before January 1, 2014 you can take the Disease Progression survey every six months to update the progression of your disease. Those who registered on or after January 1, 2014 can take the survey three times during the first year and twice a year thereafter. 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.