Amyotrophic Lateral Sclerosis (ALS) a fatal neurological disease attacks the nerve cells. The disease first gained national attention as Lou Gehrig’s disease, named after the baseball player who was diagnosed with ALS in 1939. To date, the causes of ALS are still unknown and there is no known cure. According to recent estimates, about 16,000 people in the U.S are living with ALS.
Learning more about ALS is an important step in the battle to defeat the disease, the CDC’s Agency for Toxic Substances and Disease Registry (ATSDR) https://www.atsdr.cdc.gov developed the registry to gather information on living with ALS and to help doctors and scientists learn more as they work towards a cure.
CDC’s National ALS Registry is the only population-based registry in the U.S that collects information to help scientists learn more about what causes ALS. Registry information is private and can only be viewed by Registry-approved scientists.
The ALS Registry helps people and scientists by:
- Collecting, managing and analyzing data about people with the disease
- Estimating the number of people who have ALS at a specific point in time
- Helping to understand who gets ALS and what factors affect the disease
- Helping to examine the connection between ALS and other motor neuron disorders that can be confused with ALS
- Improving care for people with ALS
The National ALS Registry encourages people with ALS to join the Registry by going to https://www.cdc.gov/als. Resources available through the Registry includes information on clinical trials and epidemiological studies, enables registrants to donate blood, salvia, and urine to the National ALS Biorepository, receive support from ALS clinics and support groups, and receive up-to-date reports and journal articles.
Eva Feldman MD, PhD at the University of Michigan is doing research to help identify risk factors from ALS that may have resulted from the environment where people lived or worked. She is studying whether specific patients were potentially exposed to different toxins and will compare the patient’s risk factors to similar people who do not have ALS.
To further understand possible risk factors that could cause ALS, CDC on September 27, 2018, posted a grant notice forecast seeking additional research on ALS. The notice tiled “Identify and Evaluate Potential Risk Factors for ALS” (RFA-TS-19-001) has the potential for $7,500,000 in funding.
Go to https://www.grants.gov/custom/printForecastDetails.jsp for the grant forecast notice. The estimated date for the grant notice to be posted is November 23, 2018 with the estimated award date to be August 30, 2019.