The ALS Therapy Development Institute’s ALS Research Collaborative (ARC) is the most comprehensive and longest running natural history study in ALS. Our researchers partner with people living with ALS around the world to share and gather data on medical histories, family histories, genetics, biomarkers, and patient cell biology to better understand the disease. We then share this de-identified data with researchers around the world to accelerate drug discovery.
Our goals are to:
• Advance ALS research by sharing data with researchers around the world. Discover new targeted treatments for ALS.
• Make clinical trials faster and more efficient through biomarker discovery.
• Empower people with ALS by giving them access to their own data. Only by working in true partnership with people with ALS can we expand our comprehensive database and enhance our knowledge of this disease.
Everyone with an ALS diagnosis can sign-up and provide their data to the ARC Study. All data collection is done online, no travel. Participants have access to a secure portal to enter their data and review it as well as ARC progress online. Those that meet additional criteria may be asked to participate in additional arms of the ARC.
1) 18 years or older
2) Fluent communication in written English.
3) ALS Diagnosis – possible, lab-supported probable, probable, definitive.
4) Diagnosis of another Motor Neuron Disease (e.g., PLS)
5) Asymptomatic carrier of a genetic mutation.