The National ALS Registry is used to collect, manage and analyze data about people with ALS. The more people signed into the Registry, the more information researchers have access to in their work toward a cure, treatment, and prevention. When people with ALS include themselves in the National ALS Registry, they’re including themselves in the national effort to end ALS.
Because the Registry is its own unique research project and requires people with ALS to join the Registry directly, here are five things people with ALS should know before enrolling.
- What information is collected?
Researchers require basic and specific information prompted by the Registry in the risk factors survey. Information required for the survey includes demographic information, disease progression (updated twice a year), family history, military history, occupational history, physical activity and smoking and alcohol use.
If someone with ALS enrolls in the Registry, they are also eligible to have their information included in the National ALS Biorepository. The Biorepository collects and stores samples of biological material. This could include blood, urine, tissue, cells, DNA, and proteins, as well as some medical data accompanied by a written consent form.
Information gathered from the Registry and the Biorepository are essential to future research efforts and clinical trials.
- How is information on the Registry used?
Research is a crucial element in discovering a cure to ALS, making the Registry an incredible tool to easily accessing information. The Registry’s Research Notification System allows people with ALS to participate in clinical trials. The latest clinical trial in place hopes to seek incidence and prevalence of ALS in the United States and is still in the recruitment process.
- How is this Registry different from other research collection methods?
The Agency for Toxic Substances and Disease Registry (ATSDR) collects information using the Registry in what could possibly be the nation’s largest research project for the disease. Linking patients to researchers by means of a registry like this one streamlines the data gathering process. Individuals reporting data to researchers through the Registry instead of relying on health care providers to identify cases will make research processes more efficient.
- What is the Registry intended to accomplish?
With the information gathered through the Registry, researchers intend to estimate the number of new cases each year and the number of people with ALS at a specific point in time. They also hope to examine the connection between ALS and other motor neuron disorders that can be confused with, misdiagnosed as, and/or progress to ALS. While evaluating information in the Registry, the overall goal is to improve care for people with ALS.
- How do I register?
Although many cases are identified through data reported by National databases such as those from Medicare, Medicaid, the Veterans Health Administration, and the Veterans Benefits Administration, others are identified when people with ALS actively enroll in the National ALS Registry via an on-line self-reporting web portal. People with ALS should not assume that their information has automatically been entered into the Registry. The only way to know for certain is by visiting their website.