Compass is still being developed and is effectively in beta. Some content and features may be incomplete, change, or not work as expected.

Content is anchored to trusted sources where available, but Compass has not yet been clinically reviewed. It provides general information rather than medical advice.

Feedback helps us identify gaps, errors, usability problems and opportunities to improve Compass over time.

How Compass is developedGive feedback

ALS Research Collaborative

Registries and data contribution · By ALS Therapy Development Institute (opens in a new tab)

The longest-running ALS natural history study. Take part from home with monthly surveys, a speech recording, and optional blood samples and genetic screening.

  • Featured
↗ Open ALS Research Collaborative on ALS Therapy Development Institute’s site (opens in a new tab)

ARC (formerly the Precision Medicine Program) follows people with ALS over time to understand how the disease progresses and why it differs between people. You take part remotely: a monthly functional rating survey, a short speech recording, questionnaires, and optionally blood draws, activity trackers and genetic screening. It is open to anyone with ALS and to people who carry an ALS gene without symptoms, from any country, though some parts such as home blood draws are US only. Its data feeds the Answer ALS research portal.

Who it is for
People with ALS/MND, Gene carriers, Researchers
Where it works
Anywhere
How you reach it
Website
Who can use it
Anyone with an ALS diagnosis
  • EverythingALS studiesDoes a similar job. Both collect monthly ratings and speech from home. ARC is the long-running study; EverythingALS runs shorter

Also from ALS Therapy Development Institute

Where Compass mentions this