The National ALS Registry will give researchers data about who has the disease and where it occurs most often. Registry data detects disease pattern changes over time and investigates possible common risk factors among people living with ALS.
This information can help researchers:
- estimate the number of new cases of ALS identified each year.
- estimate the number of people who have ALS at a specific point in time.
- understand who gets ALS and what factors affect the disease.
- examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS.
- improve care for people living with ALS.
Currently, there is no accurate picture of who has ALS. The more people living with ALS who participate in the registry, the more accurate this picture will become. People living with ALS are able to self-enroll in the registry (or receive help from a caregiver/loved one) and provide scientists and doctors with the information they need to answer these and many countless questions that have gone unanswered since ALS was first discovered.