The fALS Connect registry aims to connect fALS families with scientists who are engaged in fALS research. The goal of the registry is to accelerate progress towards finding a cure for this disease. We encourage both affected individuals and unaffected family members to sign up for the registry.
Registered members may complete a profile in order to provide basic information about themselves and how the disease has affected them and their family. There is also an opportunity to upload the results of genetic testing and medical records. Registered members may view anonymous summary information about other people who have joined the registry. fALS Connect will periodically send registered members information about opportunities to participate in research studies for which they may be eligible.
It is important to note that participation in the fALS Connect Registry does not mean that you also have enrolled in the National ALS Registry, which is maintained by the U.S. Centers for Disease Control and Prevention (CDC). The registries are different and information in fALS Connect is not shared with the National ALS Registry. If you are a person with ALS, we encourage you to sign up for both registries, as the National ALS Registry also has a component focused on familial ALS. To enrol in the National ALS Registry, visit the CDC’s ALS Registry website at www.cdc.gov/als or click on the link below.