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Joining the National ALS Registry
Part of Centers for Disease Control and Prevention
USOfficial or government body
This describes who publishes a source, not how reliable it is.
Open source (opens in a new tab)Link checked August 2026
About this source
The CDC's page on joining the US National ALS Registry: what the registry is for, what it collects, what it offers people who join, and how participants' information is kept private.
Where this source is used
Used in 4 places across 1 domain.
Questions
Research & Trials
Research Registries
- What are research registries, and why join one?
Adds context
“Many registries ask mainly for information, sometimes updated over time, rather than for visits or treatments.”
A worked example of the low-burden kind: joining this national registry needs only a computer, an internet connection and an email address, and the taking part is online surveys. It is one registry in one country, and it separately offers optional donation of blood, saliva and urine.
All that you need is a computer, an internet connection, and an email address.
Learn more about signing up. - What are research registries, and why join one?
Supports this
“Some registries will tell you about clinical trials you might be eligible for.”
Lists receiving emails about clinical trials and epidemiological studies among the things people who join can choose. The Compass sentence says only that some registries do this, and this is a registry that does. No quote: the source states it as a list item rather than as a complete sentence.
- What are research registries, and why join one?
Adds context
“Information contributed to registries helps researchers understand how ALS/MND varies and how it progresses, and helps in finding and testing treatments.”
One real registry describing what is done with the information it holds: looking for changes in disease patterns over time and for risk factors people with ALS have in common. This is a single national registry in the United States rather than a statement about registries generally.
Researchers can use Registry data to look for disease pattern changes over time.
Joining the Registry - What does joining involve, and what about my data and privacy?
Adds context
“Information passed to researchers is normally handled so that they cannot directly identify you.”
One registry saying plainly what it does: people who join are not identified by name, and the information can only be seen by scientists the registry has approved. This is a single national registry in the United States, not a general rule.
Anyone who registers is not identified by name.
Learn more about signing up.
This is an external source. Compass links to it and describes it but does not hold rights over it. Opening it takes you to the publisher’s own site.