PatientsLikeMe ALS contribution expands free PRO-ACT database

PLM database contains reports from 14,000+ patients

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by Mary Chapman |

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The data platform PatientsLikeMe (PLM) has made its de-identified amyotrophic lateral sclerosis (ALS) patient database available to scientists around the world to advance clinical research in the neurodegenerative disorder.

Part of a collaboration between PLM and the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital (MGH), the platform’s ALS data will expand the Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database, which is sponsored by the ALS Association and managed by NCRI.

The PRO-ACT platform merges and harmonizes anonymized data from clinical investigations as a free resource to the ALS scientific community. It contains data from 29 Phase 2 and Phase 3 clinical trials and 11,685 fully de-identified patient records.

The PLM database houses medication and symptom reports from more than ALS 14,000 patients, including roughly 8,000 de-identified records from patients across 28 completed public and private clinical studies. NCRI will host and maintain this dataset as well.

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“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,” Alex Sherman, director of the Center for Innovation and Biomedical Informatics at the NCRI, said in a PLM press release. “We’re excited for this continued partnership and look forward to getting closer to a world without ALS.”

The partnership’s aim is to find a cure or better treatments for the disorder, which is marked by the progressive loss of motor neurons that control patients’ voluntary muscles, leading to muscle weakness. Current therapies can slow its progression and extend survival by a few months, but none can stop the disease or cure it.

“ALS is a devastating disease that is an integral part of our founding story,” said Chris Renfro-Wallace, PLM CEO. “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.”

Researchers access the data by submitting a request form.

Touted as the world’s largest integrated community, health management, and real-world data platform, PLM enables its more than 850,000 member patients to monitor symptoms, share their experiences and therapeutic outcomes, and learn how to improve their care by interacting with peers.