Update: National ALS Registry

by ALSN Staff on Mon, 2012-10-01 09:45

Launched on Oct. 19, 2010, the National ALS Registry has grown to include registrants from all 50 states — but more ALS registrants are needed

Article Highlights:
  • The National ALS Registry has developed into a comprehensive resource in the fight against ALS.
  • Over the last year, the registry implemented three new projects aimed at improving accuracy and making it easier for researchers to use.
  • The Registry's success depends on identifying all cases of ALS in the U.S.; people with ALS are encouraged to register.

In the two years since it was launched on Oct. 19, 2010, the National ALS Registry has grown to include registrants representing all 50 states and the District of Columbia, and developed into a comprehensive resource in the fight against ALS.

The Registry is funded by the federal government and headquartered in Atlanta at the Agency for Toxic Substances and Disease Registry (ATSDR), which is a federal public health agency of the U.S. Department of Health and Human Services.

Its goals are to determine how many new cases of ALS are identified each year (incidence) in the U.S., and how many people are living with ALS at a given time (prevalence); characterize the demographics of people who get ALS; and form a better understanding of risk factors for the disease, such as environmental and occupational factors.

New projects enhance usability

Over the last year, the Registry implemented three new projects aimed at improving accuracy and making it easier for researchers to use.

Surveillance projects in three states and eight metropolitan areas have been put in place to help ATSDR ensure that Registry data are complete. (The three states are Florida, New Jersey and Texas; the eight metropolitan areas are Atlanta, Baltimore, Chicago, Detroit, Las Vegas, Los Angeles, Philadelphia and San Francisco.)

Participating state and metropolitan areas are charged with contacting every neurologist who has diagnosed or provided care to a person with ALS at any time from Jan. 1, 2009 through Dec. 31, 2011. The neurologists are asked to report information such as demographics and date of diagnosis on people with ALS who have come under their care.

Data pertaining to deaths and hospital discharges will be evaluated to identify potential cases of ALS that aren't reported to the surveillance project, and efforts will be made in each case to determine why the person was not reported and to obtain a case report if the person actually had ALS.  

Information generated through the surveillance projects will identify areas or groups that are not well represented in the Registry. ATSDR follow-up will include the initiation of outreach efforts designed to help promote the inclusion of people from any underrepresented groups.

A clinical research notification system helps people with ALS find out about new research studies.

Under the new system, researchers who are looking for people with ALS for participation in studies can contact ATSDR. They must provide information about their study and show that it's been approved by an Institutional Review Board (IRB). ATSDR will email study information for projects that meet its criteria to people enrolled in the Registry; those interested in participating can contact the researcher for further details.

Not everyone enrolled in the Registry will be notified; ATSDR will only send information to Registry members who have indicated that they want to be notified about research studies.

The Registry does not release names or contact information of its enrollees.

A bioregistry study is helping to determine the feasibility of collecting biological samples (for example, blood or tissue) from people who are enrolled in the Registry.

The study involves creating a bioregistry following a plan that was developed by outside experts. ATSDR will look at the best ways to collect, store, and share samples and then test the best methods. Test results will help ATSDR determine whether a national ALS bioregistry is practical. 

Combining data from samples with information about the person who submitted them could help researchers better understand what causes ALS.

Registry success requires participation

Because the Registry's success depends on identifying all cases of ALS in the U.S., people with ALS are encouraged to register — a brief process that can be done through the registry Web portal. All people with ALS must provide consent to participate in the Registry; those who are unable to complete the process can have someone assist them.

People with ALS who already have registered are encouraged to be sure they have completed all risk factor surveys. For example, the survey on smoking should be completed even if the registrant has never smoked.

For more information, visit the National ALS Registry website, where you can find: the National ALS Registry Fact Sheet; answers to Frequently Asked Questions; a Quick Start Guide for people with ALS; information about how personal information is protected; and more.

ALSN Staff
No votes yet
MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email publications@mdausa.org. See comment policy

Advertisements

myMuscleTeam