Read the full announcement below and attend our Town Hall on August 9, 2023, to learn more about what this means for the ALS community. Register here.

The ALS Therapy Development Institute (ALS TDI) is partnering with Unite Genomics, a leading healthcare data analytics company, to integrate electronic health record (EHR) data into the ALS Research Collaborative (ARC) via Unite Genomics’ state-of-the-art healthcare data access and analytics platform. This collaboration has the potential to advance ALS research both at ALS TDI and throughout the ALS space by leveraging the power of participants' complete medical histories.

ARC is an ambitious global initiative developed to better understand the underlying biology of ALS and to accelerate the discovery of treatments. ARC collects natural history and biological data from people with ALS, which is then made accessible to researchers worldwide through the ARC Data Commons. For over eight years, ARC has been gathering comprehensive data including self-reported surveys, blood samples, and digital measures like voice recordings and accelerometer data. However, the untapped potential of participants' health records has remained unexplored until now.

Unite Genomics specializes in harnessing healthcare data to advance medical research, making them an ideal partner for ALS TDI. By incorporating EHRs alongside ARC's genomic data and digital measures, this collaboration will significantly enhance the study and provide invaluable insights into ALS causes, disease progression, and patient subsets.

ALS TDI’s CEO, Fernando Vieira M.D, believes that this partnership signifies a significant step forward in the fight against ALS, stating that: “This collaboration holds enormous potential for ALS research. By leveraging Unite Genomics' platform, which empowers people to share their own electronic health records with the ARC study, ALS TDI can harness this untapped data source to unlock crucial insights. This integration has the potential to facilitate a deeper exploration of the disease, uncover hidden patterns, and accelerate the discovery of novel treatment approaches.”

The addition of EHR data to the ARC study offers numerous benefits that will enhance ALS research:

  • New Clinical Information: EHRs provide our team with clinical details that were not previously accessible through ARC, giving us a more comprehensive understanding of each participant's health.
  • Pre-ARC Insights: EHRs offer valuable insights into a participant's condition and medical history before joining the ARC study, providing important context and a more complete picture of their health.
  • Filling Information Gaps: EHRs fill in any missing information or uncertainties, ensuring that no critical details are overlooked and allowing for a more accurate analysis.
  • Seamlessly Integrated: Through the advanced tools provided by Unite Genomics, ARC participants will be able to access and share their past EHR data from several major healthcare providers with the study, right from their online ARC portal.

Taner Dagdelen, CEO of Unite Genomics, expressed his enthusiasm for the partnership, stating: "We are excited to work with the ALS Therapy Development Institute, a leader in the pursuit of new treatments for ALS. By working together to bring rich clinical data and state-of-the-art analytics into the ARC Study, we are unlocking vast new avenues for breakthrough discovery that have never been explored before. We hope this collaboration empowers researchers and participants alike, fostering collaboration and fueling discoveries that will transform the lives of people living with ALS, their families, and their communities. We are excited to continue deepening our collaboration with ALS TDI and hope this marks the beginning of a revolution in ALS research."

Data privacy and security remain top priorities in this collaboration. Both ALS TDI and Unite Genomics adhere to strict privacy measures, ensuring that participants' data is de-identified and securely managed throughout the research process. In addition, all ARC participants will have complete control over whether they would like to participate in the EHR import feature of the ARC portal and will also be able to specify what specific information they choose to import and share.

This collaboration marks a significant milestone in ALS TDI’s research – one that could help researchers reveal new insights into the disease, accelerate discoveries, and ultimately make a tangible difference in the lives of people with ALS.

Paul Wicks, PhD, an ALS researcher, caregiver, and community advocate, recognizes the need for, and the great potential of this integration, commenting that: “Over the past decade the ALS community has demanded that their data be put to good use in order to accelerate research and advance new therapies. Many families I've spoken to over the years were frustrated that their electronic medical records were inaccessible to researchers. It looks like the ALS TDI ARC/Unite partnership is closing that gap. I’m hopeful that the surveys, wearables, and biospecimens health data already captured by ARC will be bolstered by the data carefully entered by the care team in clinical records.”

To learn more about the expansion of the ALS Research Collaborative, register to attend the virtual Town Hall event on August 9, 2023. Register at www.als.net/als-town-hall/.


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