• Skip to main content
  • Skip to secondary menu
  • Skip to primary sidebar
  • Skip to secondary sidebar
  • Skip to footer

  • Opinion
  • Health IT
    • Behavioral Health
    • Care Coordination
    • EMR/EHR
    • Interoperability
    • Patient Engagement
    • Population Health Management
    • Revenue Cycle Management
    • Social Determinants of Health
  • Digital Health
    • AI
    • Blockchain
    • Precision Medicine
    • Telehealth
    • Wearables
  • Life Sciences
  • Investments
  • M&A
  • Value-based Care
    • Accountable Care (ACOs)
    • Medicare Advantage

PatientsLikeMe & MGH Partner to Support ALS Research

by Jasmine Pennic 05/17/2023 Leave a Comment

  • LinkedIn
  • Twitter
  • Facebook
  • Email
  • Print
UnitedHealth Group Acquires Personalized Health Network PatientsLikeMe

What You Should Know:

  • PatientsLikeMe (PLM), announced a partnership with the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital (MGH) to share de-identified patient data that can improve research outcomes for ALS.
  • The company’s outcomes-rich data is now freely available to the international research community and 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.
  • The dataset will be available by filling out the Research Proposal Form via www.data4cures.org/requestingdata.

ALS Impact

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.

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.”

  • LinkedIn
  • Twitter
  • Facebook
  • Email
  • Print

Tap Native

Get in-depth healthcare technology analysis and commentary delivered straight to your email weekly

Reader Interactions

Primary Sidebar

Subscribe to HIT Consultant

Latest insightful articles delivered straight to your inbox weekly.

Submit a Tip or Pitch

Featured Interview

Reach7 Diabetes Studios Founder Chun Yong on Reimagining Chronic Care with a Concierge Medical Model

Most-Read

HHS Finalizes HTI-4 Rule: Prior Authorization & E-Prescribing Interoperability

HHS Finalizes HTI-4 Rule: Prior Authorization & E-Prescribing Interoperability

Meaningful Use Penalties_Meaningful Use_Partial Code Free_Senators Urge CMS to Establish Clear Metrics for ICD-10 Testing

CMS Finalizes TEAM Model: A New Era of Value-Based Surgical Care

White House Event Unveils CMS Health Tech Ecosystem Initiative

White House Event Unveils CMS Health Tech Ecosystem Initiative

Digital Health Faces Q2'25 Pullback: Funding Falls to 5-Year Low, But AI Dominates and $1B+ IPOs Emerge

Healthcare Investment Shifts in 1H 2025: AI Remains a Bright Spot Amidst Fundraising Decline

Digital Health Faces Q2'25 Pullback: Funding Falls to 5-Year Low

Digital Health Faces Q2’25 Pullback: Funding Falls to 5-Year Low

Beyond the Hype: Building AI Systems in Healthcare Where Hallucinations Are Not an Option

Beyond the Hype: Building AI Systems in Healthcare Where Hallucinations Are Not an Option

Health IT Sector Navigates Policy Turbulence with Resilient M&A

Health IT’s New Chapter: IPOs Return, Resilient M&A, Valuations Rise in 1H 2025

PwC Report: US Medical Cost Trend to Remain Elevated at 8.5% in 2026

PwC Report: US Medical Cost Trend to Remain Elevated at 8.5% in 2026

Philips Launches ECG AI Marketplace, Partnering with Anumana to Enhance Cardiac Care with AI-Powered Diagnostics

Philips Launches ECG AI Marketplace, Partnering with Anumana to Enhance Cardiac Care with AI-Powered Diagnostics

WeightWatchers Emerges from Bankruptcy, Launches New Menopause Program

WeightWatchers Emerges from Bankruptcy, Launches New Menopause Program

Secondary Sidebar

Footer

Company

  • About Us
  • Advertise with Us
  • Reprints and Permissions
  • Submit An Op-Ed
  • Contact
  • Subscribe

Editorial Coverage

  • Opinion
  • Health IT
    • Care Coordination
    • EMR/EHR
    • Interoperability
    • Population Health Management
    • Revenue Cycle Management
  • Digital Health
    • Artificial Intelligence
    • Blockchain Tech
    • Precision Medicine
    • Telehealth
    • Wearables
  • Startups
  • Value-Based Care
    • Accountable Care
    • Medicare Advantage

Connect

Subscribe to HIT Consultant Media

Latest insightful articles delivered straight to your inbox weekly

Copyright © 2025. HIT Consultant Media. All Rights Reserved. Privacy Policy |