In hopes of collecting as much information as possible, the National ALS Registry, which opened in October 2010, already is expanding its reach.
Registry officials have made the enrollment process easier and are adding surveys about potential risk factors to the registry’s website.
They want to encourage everyone with an ALS diagnosis — especially those with a recent diagnosis — to participate in the registry, not only to make the database more comprehensive, but also to reach as many people as possible with important information.
During a July 13, 2011, webinar, registry officials answered questions about the current registry and outlined upcoming plans for an ALS bioregistry and a clinical trial notification system. The webinar (online seminar) was hosted by the ALS Therapy Development Institute (ALS TDI) of Cambridge, Mass., a nonprofit biotechnology firm supported in part by MDA's Augie's Quest.
No data from the registry will be made available to researchers until it’s been open at least a year, but analysis of earlier data collected by regional pilot projects should be available soon on the ALS Registry website.
The National ALS Registry was established by an act of Congress in 2008 and, after a series of pilot data-collection projects in several states, opened nationwide in October, 2010. It is funded by the federal government and headquartered at the Agency for Toxic Substances and Disease Registry (ATSDR), which is part of the Centers for Disease Control and Prevention.
According to ATSDR officials who spoke during the webinar, the registry has three main purposes:
The Registry includes not only the self-reported data from individuals and their authorized caregivers, but data gleaned from existing national databases (Medicare, Medicaid and the Veterans Administration).
The Registry enrollment process contains a series of validation questions designed to separate true ALS cases from people who may have other diseases that mimic ALS. Experts say including only those who definitely have ALS is important to ensure that the data is as accurate as possible for research and analysis.
Officials hope that data from the registry will help scientists understand more about who gets ALS and what factors affect the disease. They stress that, in order for the data to be as useful as possible, everyone who has received a diagnosis of ALS should register and take the surveys related to potential risk factors.
Currently, the registry surveys enrollees about the following:
In addition to the information already being collected, the registry is planning to add more surveys to its website covering such topics as:
Participants who want to double-check that they have registered and taken all available surveys are advised to contact Greco Johnson, the ALS system administrator, at (877) 442-9719, or by email at ALSsystemadmin@cdc.gov.
This fall, the National ALS Registry also plans to begin work on creating a bioregistry, which would collect and store biological samples (such as blood or tissue) from people diagnosed with ALS.
“We know there are other bioregistries out there, but this would be truly national in scope,” said Kevin Horton of ATSDR. He added that a nationwide bioregistry could help scientists better understand the genetic causes of ALS.
Prior to establishing the national registry, ATSDR conducted several regional data-collecting pilot projects to determine the best way to gather accurate information. Data from those pilot projects have been analyzed and submitted for publication, Horton said, and will be published soon on the registry’s website.
The registry also is gearing up to conduct several state- and metro-based surveillance projects to test the completeness of the information it has collected.
Horton also noted that the health care provider’s section of the registry website offers trainings for physicians, medical records coders and others involved with ALS patient care. Continuing education credits are available for these trainings, and more educational opportunities will be offered in the future.
Another new feature that registry officials plan to add soon is a clinical trials notification mechanism that would enable people to check a box if they wish to be notified of upcoming clinical trials for which they might be eligible.
Officials emphasized that all data collection will continue to be secure and that participants’ privacy will be protected. No data will be released to researchers for at least a year after the registry opens, and when it is, all identifying information will be removed.
In the coming days, the webinar will be archived and available for viewing on the ALS TDI website.
See also Frequently Asked Questions About the New ALS Disease Registry in the November-December 2010 issue of the MDA/ALS Newsmagazine.