The National ALS Registry Act, launched in October, 2008 is the first federal program to collect, manage and analyze widespread data about Americans with the disease – using multiple sources.
ALS or Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig’s disease affects an estimated 30,000 people in the United States- primarily older adults. The neurodegenerative disorder causes nerve cells to stop functioning and die. The disease has no known cure and treatments are often ineffective. Patients live on average two to five years with the disease – so researchers have only a small window in which to capture data. It progressively destroys the brain’s and spinal cord’s motor neurons, crippling sufferers. What causes ALS has not yet been identified.
The ALS Registry may ultimately become the single largest ALS research project ever created. Never before has such a comprehensive effort been done on this scale to get a real clear picture of who gets the disease and why. The registry aims to collect information from a large number of individuals about heredity, possible environmental exposures, symptoms, military service, physical activity, but also gathers data online from current and participating sufferers. Until now, many researchers felt similarly helpless. Their hope is a new national registry could lead to better treatments and even a cure.
So, why did the country lack a national registry until October, 2008? Doctors, after all, diagnosed Lou Gehrig with ALS almost a century ago, and a French neurologist first described the disease in 1869.
The reality, because such a small population of the country has ALS, a registry was never a national priority. No independent organization could build the registry because the law forbids private groups from collecting sensitive medical data for these purposes. From its inception by Rep. Eliot Engel of New York to becoming law, the ALS registry act witnessed a six-year (2001-2008) congressional battle, led mostly by ALS patients themselves.
Although researchers have for years studied ALS and collected data, the focus was typically on specific people – military veterans or athletes, for example. Thus, broad determinations about the disease were virtually impossible. To complicate the research, no one group collected data from the various studies, reports and doctor’s offices. Because of this, scientists don’t know how many new cases occur each year.
The federal government does not require ALS patients to report the disease, as it does with cancer patients. Researchers can only hope current sufferers volunteer to include their information in the registry.
If you or a family member is coping with ALS, please enroll NOW.