ClinicalTrials.gov is a website that provides patients, family members, health care professionals, and other members of the public easy access to information on clinical studies on a wide range of diseases and conditions. Information is provided and updated by the sponsor or principal investigator of the clinical study and the website is maintained by the U.S. National Library of Medicine (NLM) at the National Institutes of Health (NIH).
Northeast ALS Consortium (NEALS)
Comprehensive ALS clinical trial database, clinical trials 101 information, and blog to keep patient and caregiver communities well-informed about clinical research, trial opportunities, and scientific advancements world-wide.
National ALS Registry
The Center for Disease Control’s (CDC) growing registry of ALS patients to help improve understanding of who gets ALS and factors that affect disease.
Project ALS identifies and funds the most promising scientific research that will lead to the first effective treatments and a cure for ALS. We recruit the world’s best scientists and doctors to work together—rationally and aggressively—to develop a better understanding of the ALS disease process and, in parallel, better therapeutic strategies.
Target ALS provides a framework for the world's leading ALS researchers to coordinate their findings so that we can make progress toward therapies and a cure.
The Robert Packard Center for ALS Research at John Hopkins
The Packard Center's aim is to provide innovative, promising, focused projects with researchers who understand that collaboration is a powerful catalyst in ending the disease.
ALS Therapy Development Institute (TDI)
The ALS TDI’s community page includes events, an online forum, and social networking opportunities.
Scientific effort investigating alternative and off-label ALS treatments, while bringing together patients, clinicians, and scientists via Twitter, a social networking tool.
PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments.