The National ALS Registry is the single largest ALS research project ever created and the only population-based registry in the U.S. The registry collects information and demographics on people with ALS, connects patients to clinical trials, and funds ALS research. The purpose of the registry is to learn more about who gets ALS and what causes ALS. This will hopefully give scientists a more complete understanding of the disease and enable them to find a cure.
The National ALS Registry also includes a Biorepository that stores samples for future research.
Recently, the Registry was used for the first time to recruit patients and caregivers into a landmark patient-focused drug development survey that captured important information on the burden of ALS across multiple dimensions, including: symptom experience, quality of life, health care resource utilization, and emotional well-being. Other important advances made possible by the ALS Registry include attaining a 96 percent enrollment rate for registrants to be notified about ALS research opportunities (more than 100,000 such notifications being sent for over 30 clinical trials) and research funding for 13 institutions to examine what factors may contribute to ALS. ATSDR recently released the third report on the results of the data gathered by the National ALS Registry. You can read the report here.
If you are interested in joining the National ALS Registry or learning more about the latest news from the Registry, please visit https://www.cdc.gov/als/.
It is vital that the National ALS Registry continues to be fully funded. Congress has started work on the Fiscal Year (FY) 2019 appropriations process and Representatives Eliot Engel (D-NY) and Peter King (R-NY) are circulating a bipartisan Dear Colleague letter in the House of Representatives (see it here), urging their colleagues to support $10 million in funding for the Registry. The deadline for this letter has passed, but there is still more you can do to help make sure your Representatives are aware of the importance of issues affecting people with ALS.
Visit the ALS Association’s Advocacy Action Center to learn about the latest updates and news about legislative and regulatory issues being addressed by The ALS Association and to sign up to receive alerts when your action is needed to support people living with ALS.