Methodology

Every organization in the directory is sourced from one or more of the following:

• International Alliance of ALS/MND Associations — global registry of national member associations.
• ClinicalTrials.gov — sponsoring institutions and trial sites for active ALS studies.
• PubMed — research centers identified through recent ALS publications.
• National ALS associations — local clinic networks, support groups, and equipment loan programs published by national bodies.
• Community submissions — listings added via our Add Org form, reviewed before going live.

Each record is normalized, geocoded where possible, deduplicated, and tagged by type (clinic, support group, research center, advocacy, etc.).

Every organization receives a 0–5 score across six dimensions. The overall score is the average of the dimensions for which we have data.

• Services — breadth of services offered (multidisciplinary clinic, equipment, respite, etc.). Source: organization profile + tags.
• Research — active clinical trials and recent PubMed publications. Source: ClinicalTrials.gov + PubMed.
• Accessibility — geographic coverage, languages, telehealth, and patient access. Source: organization profile + community input.
• Patient Support — support groups, helplines, financial assistance, caregiver programs. Source: organization profile.
• Data Completeness — how complete and current the listing is (contact info, mission, services, leadership). Source: directory record + freshness.
• Community — community ratings and reviews from patients, caregivers, and clinicians.

Every listing carries one of three trust statuses, shown as a badge:

• Verified — the organization has claimed its listing and a team member has reviewed it.
• Community Submitted — submitted by a community member but not yet verified by the organization itself.
• Auto-imported — pulled from a public data source (Alliance, ClinicalTrials.gov, PubMed). Accurate to the source at time of import; not yet claimed.

Organizations can claim their listing at any time to upgrade to Verified status and keep their information current.

• ClinicalTrials.gov data — refreshed daily.
• PubMed publication counts — refreshed weekly.
• Community submissions — reviewed within 48 hours.
• Claimed listings — updated by the organization in real time.
• Bulk re-import from national associations — quarterly.

• International Alliance of ALS/MND Associations ↗ — Global member directory of national ALS/MND associations.
• ClinicalTrials.gov ↗ — Live registry of ALS clinical trials worldwide (refreshed daily).
• PubMed (NCBI E-utilities) ↗ — ALS-related research publications and investigator activity.
• National ALS associations ↗ — ALS Association (US), MND Association (UK), ALS Canada, MND Australia, and many others.
• Community submissions — Listings nominated and reviewed through our public submission form.