On December 13-14, 2017, 52 people gathered in Charlotte, N.C., to discuss how to increase awareness and participation in the National ALS Registry, the only population-based registry in the country collecting information to help scientists learn more about who gets ALS and its causes. Researchers use the Registry in their studies to find possible treatments and a cure.
The ALS Association believes collaboration with all partners will intensify the momentum needed to advance the Registry. Attendees in last month’s meeting -- people living with ALS and their family members, numerous representatives from The ALS Association chapters, members of the National ALS Registry Taskforce, and representatives from the Agency for Toxic Substances and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention (CDC) – are all critical to the Registry’s success.
As part of the best practices meeting, representative of the CDC provided updates on the Registry and answered questions on December 13. On December 14, a full-day brainstorming session using large group and small breakout sessions helped build consensus around new strategies for improving Registry recruitment and retainment.
By the meeting’s conclusion, attendees had prioritized four strategies:
1. Regular education and training for staff and volunteers to increase their knowledge base;
2. Improved branding and communication to increase awareness;
3. A reminder program to prompt participants to fully fill out the surveys; and
4. A volunteer program to increase Registry participation.
The ALS Association looks forward to working with chapters and our partners to implement these strategies.
Launched in 2010 by the ATSDR, the Registry is a congressionally mandated registry for people in the U.S. with ALS. It gathers data about ALS from people who have the disease through an online web portal and from existing national health databases (i.e. Medicare, the Veterans Administration). Data in the Registry documents the incidence and prevalence of ALS, describes the demographics of those with ALS, and examines risk factors for the disease.
If you have ALS, please join the Registry and complete the brief risk-factor surveys to help scientists who are trying to defeat the disease. Click the image below to get started today.