According to a story from the Centers for Disease Control and Prevention, the National ALS Registry is playing a vital role in learning more about amyotrophic lateral sclerosis, a devastating and fatal neurodegenerative disease. The registry is intended to record information about patients with this illness in order to detect possible patterns as they emerge.
About Amyotrophic Lateral Sclerosis
Amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s disease, is a rare, degenerative disease that causes the death of nerve cells associated with the voluntary muscles. Little is known about the origins of amyotrophic lateral sclerosis, with no definitive cause in about 95 percent of cases. The remaining five percent appear to inherit the disease from their parents. Symptoms initially include loss of coordination, muscle weakness and atrophy, muscle stiffness and cramping, and trouble speaking, breathing, or swallowing. These symptoms worsen steadily over time; most patients die because of respiratory complications. Treatment is mostly symptomatic and the medication riluzole can prolong life. Life expectancy after diagnosis varies, with some patients can surviving for substantially longer than others. To learn more about amyotrophic lateral sclerosis, click here.
Registries and Research Go Hand in Hand
Researchers are using the registry in order to find the answers to key questions about the disease that could allow the to learn more.
Some of these questions include:
- Where did these patients live?
- What kinds of jobs did they have?
- Were they exposed to any specific pollution in the environment?
- Did their relatives have a history of ALS or other diseases?
Answering these questions can create critical starting points for future research as well as the development of effective treatments for amyotrophic lateral sclerosis. It is not an exaggeration to say that much of the ongoing research into the disease would not be possible without utilizing data from the registry.
In data gathered from 2010 to 2015, a total of 16,853 cases of amyotrophic lateral sclerosis were identified in the US. Patients were more likely to be male, over age sixty, and white.
The National ALS Biorepository
One valuable aspect of the National ALS Registry is the National ALS Biorepository. This contains physical samples of blood, saliva, hair, urine, and more from patients. These samples are another valuable aspect of research. There is an urgent need for progress in the treatment of amyotrophic lateral sclerosis; current therapies offer only minimal benefit to patients. With all of these research tools available, it will only be a matter of time before the next breakthrough.
