The National ALS Registry

On October 19, 2010, the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) announced the full implementation of the National ALS Registry. The Registry will identify cases of ALS from throughout the United States and collect vital information about the disease that may help researchers learn what causes ALS and how it can be treated and even prevented.

If you have questions that are not answered below, please submit them to advocacy@alsa-national.org. The ALS Association will work with the ATSDR to answer your questions.

To enroll in the registry, please visit: www.cdc.gov/als.

Frequently Asked Questions

  1. What is the purpose of the National ALS Registry?
    The registry has been started to:

    - better 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
    - better 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
  2. 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 Veteran’s Administration). Persons whose information is not in these databases will not be included.
  3. Can survivors enroll deceased loved ones?
    No, only current ALS patients can enroll in the registry.
  4. Why doesn’t the Registry allow family members to enroll loved ones who have passed away from ALS?
    While the Agency for Toxic Substances and Disease Registry (ATSDR) would like to have details about deceased persons with ALS, there are a number of reasons why it’s potentially problematic to enroll those who have lost their fight to ALS. First, there is a concern that 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 one point in time and go forward. By allowing family members to enroll a patient who died years ago will likely introduce bias and incomplete data as not all ALS patients who passed away will have a family member to enter them into the Registry. While 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 (Medicare, Medicaid, the Veterans Administration).
  5. Will the registry include primary lateral sclerosis (PLS) or other similar conditions?
    Not at this time. As yet, identifying characteristics for other motor neuron disorders, such as PLS, have not been established. 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.
  6. Can caregivers or physicians enroll people with ALS?
    Caregivers and others may assist people with ALS in enrolling, including over the phone; however, people with ALS 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). 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.
  7. 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 people with ALS 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, people 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).
  8. 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.
  9. 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. The federal government’s Office of Management and Budget (OMB), currently prohibits the Registry and the Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention (ATSDR/CDC) from sharing general Registry information with the public, including the number of people enrolled in the Registry, the number of people enrolled from specific states, average ages, race, and other general information. Under the Paperwork Reduction Act, the OMB must approve any effort by the federal government to collect data from United States citizens to ensure that the data collection does not impose a burden on citizens and that privacy and data collected laws are followed.
  10. Who else can access data?
    Right now only ATSDR researchers can access the data.
  11. Why do I have to enter part of my Social Security number to enroll in the Registry online?
    The Registry is only asking for the last 5 digits of the Social Security number, not the entire 9 digit number. Because the Registry identifies cases of ALS from multiple difference sources, including from Medicare and the Veterans Administration, the Registry needs to make sure people are not counted twice. 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 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.
  12. Is my name 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.
  13. 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.
  14. Can people with ALS change/amend/update data or verify their enrollment?
    Yes, patients are encouraged to update their information regularly.
  15. What data are collected from the national databases?
    ATSDR is collecting basic demographic information and information about ALS treatment and healthcare provider visits.
  16. 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
     - Lifestyle information
     - Military history
     - Smoking and alcohol consumption history
     - Physical activity history
     - Family history
     - Disease progression
     - Head trauma (anticipated in 2011)
  17. Is DNA being collected?
    ATSDR is not collecting DNA right now, but is looking at possibly expanding to include DNA in the future.
  18. Where are the data stored?
    The data are stored on secured computer servers at ATSDR.
  19. 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. In fact, Registry 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. The ALS Association will continue to work closely with ATSDR and the clinical, research, and scientific communities to consider and recommend additional surveys for inclusion in the Registry.
  20. 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. The ALS Association will continue to work closely with ATSDR and the clinical, research, and scientific communities to consider and recommend additional surveys for inclusion in the Registry.
  21. Is reporting of ALS cases mandatory?
    Only one state in the country, Massachusetts, has mandated reporting of ALS cases. ALS is not reported at the federal level.
  22. Does the portal direct people with ALS to services, research studies, organizations?
    Yes, the Web portal directs people with ALS to clinical trials and other resources.
  23. 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.
  24. 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.
  25. 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.
  26. Will anyone contact me to follow-up on my progression?
    Yes, once you are enrolled, the Registry will send automatic reminders during the year encouraging people with ALS to update their information. People with ALS are encouraged to update their information regularly.
  27. 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 Veterans Administration’s ALS Registry. Based on information learned from ALS Registry pilot studies, ATSDR has created an algorithm to successfully identify ALS cases from existing national databases.
  28. 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.
  29. 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.
  30. 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. The State surveillance programs are underway in Florida, New Jersey and Texas.
  31. Will there be other states?
    ATSDR currently has 3 participating states (Florida, New Jersey and Texas). In addition to the state surveillance programs, ATSDR is also funding 4-6 ALS surveillance programs in select large metropolitan areas.
  32. How does this feed into the National ALS Registry?
    While the surveillance data will not directly feed into the National Registry, data from both state and metropolitan areas surveillance programs will be used to evaluate the completeness of the National ALS Registry.
  33. I’ve enrolled in another registry (eg, 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.
  34. What makes this registry different than 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.
  35. I’m signed up with my Chapter. Am I enrolled in the Registry?
    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.
  36. How will the registry benefit research?
    The registry will benefit research in several ways:

     - The National ALS Registry for the first time will 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 role in 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 cure for that disease.
  37. If I have a family history of ALS, but do not have the disease, can I enroll?
    No. The Registry only enrolls people with ALS.
  38. How long will the Registry operate?
    There is no defined period for how long the Registry will operate.
  39. Is there a deadline to enroll?
    No. There is no deadline to enroll in the Registry.
  40. Why should I enroll in the Registry?
    It is very important that all people with ALS enroll in the National ALS Registry to help advance research into the cause and treatment of ALS and to enable the Registry 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.

Go to Navigating Life with ALS page


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.