PatientsLikeMe Shares Amyotrophic Lateral Sclerosis (ALS) Data to Expand PRO-ACT Database

Data from digital platform to support Massachusetts General Hospital’s efforts to advance clinical research

BOSTON–(BUSINESS WIRE)–PatientsLikeMe (PLM), the trusted digital platform that empowers over 850K patients to navigate their health journeys, announced today that it has partnered with the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital (MGH) to share de-identified patient data that can improve research outcomes for amyotrophic lateral sclerosis (ALS). This news was announced onsite at the 2nd Annual ALS Drug Development Summit. With this collaboration, the company’s outcomes-rich data is now freely available to the international research community. This dataset will be a significant addition to Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database comprising anonymized data from 29 clinical trials and 11,685 patient-records. Both datasets will be hosted and maintained by the NCRI.

ALS (also known as Lou Gehrig’s Disease) is a disease that involves the degeneration and death of the nerve cells in the brain and spinal cord that control voluntary muscle movement. As a progressive motor neuron degenerative disease, only about 25% of patients survive for more than 5 years after diagnosis. Given the fact that ALS is a rare disease and there’s no existing cure, pharmaceutical and medical research are committed to slowing or stopping disease progression, with 335 total clinical trials reported within the United States.

“As a consequence of the severity and rarity of ALS, advocacy and patient support groups, like PLM, serve as valuable resources for patients throughout their disease journey, as well as repositories for research data,” said Alex Sherman, Director of the Center for Innovation and Biomedical Informatics (CIB) at the NCRI and a Principal Associate in Neurology at Harvard Medical School. “We’re excited for this continued partnership and look forward to getting closer to a world without ALS.”

The growing PLM database currently houses over 2.3 million medication reports, 24 million+ symptom reports, 570,000+ clinically validated patient reported outcomes (PRO), in addition to more than 8,000 de-identified records from ALS patients across 28 completed clinical trials that have been both publicly and privately conducted. With this arrangement, data from over 14 thousand people living with ALS comprising the PLM ALS database will be a substantial enhancement available to ALS researchers like PRO-ACT.

“ALS is a devastating disease that is an integral part of our founding story,” said Chris Renfro-Wallace, Chief Operating Officer at PatientsLikeMe. “We’re proud to partner with MGH and the team at PRO-ACT. This data represents a contribution made by patients and their families over the course of our rich history in ALS that dates to 2005. We know that partnering with the scientific leaders at MGH is the best way to honor the trust that patients put in us to ensure their data is used for good. We share this data in the hope of accelerating our search for the cure.”

The dataset will be available by filling out the Research Proposal Form via

To learn more about how we’re helping patients navigate their healthcare journey, visit our website here.

About PatientsLikeMe

PatientsLikeMe is the world’s largest integrated community, health management, and real-world data platform. On PatientsLikeMe, members can put their disease experiences in context and find answers to their questions. They can easily connect directly with members who have the same conditions, are experiencing the same symptoms, or have used similar treatments. Data generated by members themselves are systematically collected and quantified while also providing an environment for peer support and learning. The site enables members to monitor symptoms of their condition(s), share their disease experiences and treatment outcomes, and learn how to improve their care through peer-to-peer interactions. This data captures the complex temporality and competing influences of different lifestyle choices, socio-demographics, conditions, and treatments on a person’s health. Everything members share empowers the community with personal agency, establishing PatientsLikeMe as a clinically robust resource with demonstrated impact, including more than 100 studies in peer-reviewed medical and scientific journals. To learn more about PatientsLikeMe, visit

About Neurological Clinical Research Institute at Mass General Hospital

The Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital accelerates translational research in neurological disorders through initiating and testing novel therapies. The NCRI has an extensive history in leading clinical research to find new treatments for neurological diseases including Amyotrophic Lateral Sclerosis (ALS), myasthenia gravis, diabetic neuropathy, stroke, multiple sclerosis, Parkinson’s disease, and Huntington’s disease. For more information, visit or



Nicole Das