National ALS Registry

Number of service categories this organization offers.

• ✓1 service category listed

How broadly this organization advocates and informs the ALS community.

• —Raises ALS awareness
• —Online information source
• —Publishes research / reports
• —International reach
• —Engages in policy / advocacy

How easy it is for patients and families to reach this organization.

• ✓Has website
• ✓Has phone number
• —Has email
• ✓Has street address
• ✓Has map coordinates

Breadth of direct support offered to patients and families.

• —In-person support groups
• —Online support groups
• —Caregiver resources in services
• —Funds or provides home care
• —Children's resources

Percentage of profile fields with information.

• ✓Name
• ✓Type
• ✓Country
• ✓State / region
• ✓Address
• ✓Phone
• —Email
• ✓Website
• ✓Mission

Connections to research consortia and ALS networks.

• —Part of a consortia
• —International reach
• —Publishes research
• —Maintains an ALS database
• —Mentions a known network (NEALS, ENCALS, TRICALS, etc.)

Contact

Mission

US federal cross-cutting ALS surveillance and research infrastructure; not a clinical care center but critical infrastructure for every US ALS patient. Lead: CDC (Centers for Disease Control and Prevention). The largest open data platform for ALS research in the world (goal of AMP ALS, launched May 2024) Enables discovery and development of diagnostic tools, biomarkers, and treatments US federal ALS prevalence + incidence data Partners with ALS-specific patient advocacy groups for enrollment and outreach Accelerating Access to Critical Therapies for ALS Act of 2021 — landmark US federal ALS legislation establishing NIH-coordinated national clinical research consortium (ALL ALS) + AMP ALS