Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, has an estimated prevalence
of approximately 16,000 people in the U.S.1
This means that in your practice, you may be likely have personal experience with an ALS Patient. ALS is a progressive, fatal neurodegenerative disorder that causes the loss of motor neurons, eventually resulting in paralysis, respiratory failure, and death often within 3–5 years of symptom onset. Despite ALS being initially identified in 1869, the actual pathogenesis and cause remain unknown, and there is currently no cure
The most consistently known risk factors for sporadic cases are being male, Caucasian, non-Hispanic, and older.
An estimated 5–10% of cases are attributed to heredity, while the remaining 90–95% are of unknown etiology. For these latter "sporadic" cases, many potential risk factors are being explored, such as smoking and alcohol consumption; exposures to heavy metals, pesticides, and volatile organic compounds; head trauma; and occupational exposures.
The rapid progression of a disease with no cure can cause depression and family hardships for most patients, on top of their mounting physical challenges. For clinicians supporting patients with ALS, the National ALS Registry
and new National ALS Biorepository provide a concrete way for patients to be counted and fight back by supporting the nation’s largest source of ALS research.
For clinicians caring for patients with ALS, you can help support your patients by encouraging them to participate in the database that may hold the key to better understanding this disease. The National ALS Registry
, maintained by the Agency for Toxic Substances and Disease Registry (ATSDR), is the only population-based registry for the U.S. that collects information to help scientists learn more about who gets ALS and its potential causes and risk factors.
Primary care physicians and neurologists without ALS expertise can use the free ATSDR CME course
that also touches on coding procedures and updated clinical practice.
New treatments and research options offer hope
Just recently, a new clinical treatment for ALS was FDA-approved—marking only the second treatment option available in over two decades. In addition, the recent success of the “Ice bucket challenge”(an online social media fund-raiser) has helped propel awareness of ALS forward.
Importantly for patients, researchers, and clinicians, ATSDR's National ALS Registry also launched the new National ALS Biorepository
in January, 2017. The National ALS Biorepository is an exciting new component that will increase the number of biological samples from persons with ALS available for research. These samples, along with the extensive epidemiologic data collected by the National ALS Registry, are a valuable resource in the fight to identify the causes of ALS.
The new National ALS Biorepository will collect, process, store, and disseminate a variety of biological specimens such as blood, urine, and tissue from a sample of persons with ALS enrolled in the National ALS Registry who agree to take part in the Biorepository.
The National ALS Biorepository is different from other biorepositories; it collects specimens from a geographically representative sample of people with ALS that is not tied to a specific clinic or location.
CDC Grand Rounds on ALS help focus attention and offer clinician resources
In May, 2017, the Centers for Disease Control and Prevention (CDC) hosted a session of Public Health Grand Rounds with ALS experts to discuss the challenges for research, drug development, patient care, and the past, present and future of the national registry. Patient and advocate Ed Tessaro, explained what it’s like to live with ALS. You can watch his moving testimonial and see all of the Grand Rounds
, including getting further insight from the very informative “Beyond the Data.”
While the diagnosis of ALS is certainly traumatic, you can help support your patients by keeping up-to-date with clinical and research updates that can provide hope. Please visit the ATSDR site for free resources for clinicians and patients at: https://wwwn.cdc.gov/als/ALSOrderRegistryMaterials.aspx
1. Mehta P, Kaye W, Bryan L, et al. Prevalence of amylotrophic lateral sclerosis – United States, 2012-2013. MMWR Surveill Summ.
2. Dlveland DW, Rothstein JD. From Charcot to Lou Gehrig: deciphering selective motor neuron death in ALS. Nature Rev Neurosci.