ALS TDI’s ALS Research Collaborative (ARC) is a global initiative that partners with people with ALS to gather data about the disease to help us better understand the underlying biology of ALS and accelerate the discovery of treatments. Recently, ALS TDI announced a partnership with Unite Genomics, a healthcare data analytics company, that will allow us to integrate a new data source into the program – electronic health records (EHRs).  

Today, on Endpoints, we’re joined by Unite Genomics CEO Taner Dagdelen, to tell us more about what this collaboration entails, what researchers can learn from EHR data, and what this means for present and future ARC participants. 

ALS TDI’s <a href="https://www.als.net/news/bringing-toledo-together-to-take-on-als/" data-auth="NotApplicable" data-linkindex="0" data-loopstyle="linkonly">ALS Research Collaborative</a> (ARC) is a global initiative that partners with people with ALS to gather data about the disease to help us better understand the underlying biology of ALS and accelerate the discovery of treatments. Recently, ALS TDI announced a partnership with Unite Genomics, a healthcare data analytics company, that will allow us to integrate a new data source into the program – electronic health records (EHRs).  
Today, on Endpoints, we’re joined by Unite Genomics CEO Taner Dagdelen, to tell us more about what this collaboration entails, what researchers can learn from EHR data, and what this means for present and future ARC participants.

The Endpoints Podcast features guests from the ALS community, including people living with ALS, researchers, advocates and fundraisers. Each episode cuts to the chase with short, digestible conversations about the latest research at ALS TDI and the most closely watched ALS clinical trials as well as stories from people living with ALS with their thoughts on research, healthcare and their journey with ALS.

The Endpoints Podcast is hosted by the ALS Therapy Development Institute (ALS TDI) the world's foremost drug discovery lab focused solely on ALS. ALS TDI is a non-profit biotech with one mission. End ALS.

To access all episodes of the Endpoints Podcast, visit als.net/endpoints.

The <a href="https://www.als.net/endpoints/">Endpoints Podcast</a> features guests from the ALS community, including people living with ALS, researchers, advocates and fundraisers. Each episode cuts to the chase with short, digestible conversations about the latest research at ALS TDI and the most closely watched ALS clinical trials as well as stories from people living with ALS with their thoughts on research, healthcare and their journey with ALS.
The Endpoints Podcast is hosted by the <a href="https://www.als.net">ALS Therapy Development Institute (ALS TDI)</a>&nbsp;the world's foremost drug discovery lab&nbsp;focused solely on ALS. ALS TDI is a non-profit biotech with one mission. End ALS.
To access all episodes of the Endpoints Podcast, visit als.net/endpoints.

Endpoints

The Endpoints Podcast features guests from the ALS community, including people living with ALS, researchers, advocates and fundraisers. Each episode cuts to the chase with short, digestible conversations about the latest research at ALS TDI and the most closely watched ALS clinical trials as well as stories from people living with ALS with their thoughts on research, healthcare and their journey with ALS.

The Endpoints Podcast is hosted by the ALS Therapy Development, the largest drug discover center focused solely on ALS. Visit our website and register to access all Endpoints Podcast episodes.

The Endpoints Podcast features guests from the ALS community, including people living with ALS, researchers, advocates and fundraisers. Each episode cuts to the chase with short, digestible conversations about the latest research at ALS TDI and the most closely watched ALS clinical trials as well as stories from people living with ALS with their thoughts on research, healthcare and their journey with ALS.
The Endpoints Podcast is hosted by the <a href="https://www.als.net">ALS Therapy Development</a>, the largest drug discover center focused solely on ALS. Visit our website and register to <a href="https://www.als.net/endpoints/">access all Endpoints Podcast episodes.</a>

Endpoints Podcast

ALS TDI and Unite Genomics Partner to Bring Electronic Health Record Data into the ARC Study

Nobody knows ALS better than people living with the disease. Therefore, it’s crucial for scientists to utilize the perspectives of people with lived experience in their research.

Earlier this year, ALS TDI joined with Her ALS Story—a group of women diagnosed with ALS before the age of 35—to put on a series of Town Hall webinars that highlighted the importance of this connection. The three-part series featured discussions about ALS risk factors, lesser-known symptoms, and stories of diagnosis. In each session, researchers from ALS TDI’s ALS Research Collaborative, or ARC Study, presented information about our current scientific understanding of each topic, while Her ALS Story members shared their own personal experiences.

Today, on Endpoints, we’ll hear some highlights from each episode of the series. We’ll also be joined by Dr. Danielle Boyce, ALS TDI’s Principal Investigator, Real World Evidence, and Alan Premasiri, our Director of Clinical Operations, to discuss what they learned from the discussions and how conversations like these can help shape the way they approach their research.

If you'd like to learn more about ALS TDI's research and how we are incorporating lived experience to advance research, consider attending the ALS TDI Summit on October 17th, 2025 in Boston, MA or online. Register here: https://fundraise.als.net/alssummit/

Nobody knows ALS better than people living with the disease. Therefore, it&rsquo;s crucial for scientists to utilize the perspectives of people with lived experience in their research.
Earlier this year, ALS TDI joined with&nbsp;Her ALS Story&mdash;a group of women diagnosed with ALS before the age of 35&mdash;to put on a series of Town Hall webinars that highlighted the importance of this connection. The three-part series featured discussions about ALS risk factors, lesser-known symptoms, and stories of diagnosis. In each session, researchers from ALS TDI&rsquo;s ALS Research Collaborative, or&nbsp;ARC Study, presented information about our current scientific understanding of each topic, while Her ALS Story members shared their own personal experiences.
Today, on Endpoints, we&rsquo;ll hear some highlights from each episode of the series. We&rsquo;ll also be joined by Dr. Danielle Boyce, ALS TDI&rsquo;s Principal Investigator, Real World Evidence, and Alan Premasiri, our Director of Clinical Operations, to discuss what they learned from the discussions and how conversations like these can help shape the way they approach their research.
If you'd like to learn more about ALS TDI's research and how we are incorporating lived experience to advance research, consider attending the ALS TDI Summit on October 17th, 2025 in Boston, MA or online. Register here:&nbsp;<a href="https://fundraise.als.net/alssummit/">https://fundraise.als.net/alssummit/</a>

Your Story, Our Science: Her ALS Story and ALS TDI Bring Together Science and Lived Experience

Brain-computer interfaces, or BCIs, aim to enable people to control various adaptive devices directly with their thoughts. There are many BCI devices currently in various stages of development, with the potential to help people with ALS and similar conditions across many different activities of daily life.

One particular area in which BCI devices may be able to support people with advanced ALS symptoms is communication. Many people with ALS rely on devices such as smartphones, tablets, and laptops to write or speak. All tools like these, collectively known as augmentative and alternative communication or AAC devices, need some kind of input to work. 

This could mean using a keyboard, a touchscreen, or, for people with advanced paralysis, an eye-gaze device. As ALS progresses, however, even eye gaze devices may become difficult for some people to use. BCIs—by allowing people to control AAC devices with their minds—could be a potential solution to this problem. 

Today, on Endpoints, we’re joined by two experts to discuss BCI technology and, in particular, its potential to help people with ALS continue to communicate.

The views expressed in this podcast are those of the speakers and do not represent official endorsements by any organization. Kate Nilsen currently serves as an advisor to Synchron, a company developing a brain-computer interface (BCI) device. This device is investigational and is currently in clinical trials approved by the U.S. Food and Drug Administration (FDA). For those interested in staying informed about Synchron’s ongoing work and updates, please join the Synchron community: https://link.edgepilot.com/s/4239f747/ca21cbCpKkOSLI5ZXNqTdQ?u=https://www.synchronbci.com/StayConnected.html

Brain-computer interfaces, or BCIs, aim to enable people to control various adaptive devices directly with their thoughts. There are many BCI devices currently in various stages of development, with the potential to help people with ALS and similar conditions across many different activities of daily life.
One particular area in which BCI devices may be able to support people with advanced ALS symptoms is communication. Many people with ALS rely on devices such as smartphones, tablets, and laptops to write or speak. All tools like these, collectively known as augmentative and alternative communication or AAC devices, need some kind of input to work.&nbsp;
This could mean using a keyboard, a touchscreen, or, for people with advanced paralysis, an eye-gaze device. As ALS progresses, however, even eye gaze devices may become difficult for some people to use. BCIs&mdash;by allowing people to control AAC devices with their minds&mdash;could be a potential solution to this problem.&nbsp;
Today, on Endpoints, we&rsquo;re joined by two experts to discuss BCI technology and, in particular, its potential to help people with ALS continue to communicate.
The views expressed in this podcast are those of the speakers and do not represent official endorsements by any organization. Kate Nilsen currently serves as an advisor to Synchron, a company developing a brain-computer interface (BCI) device. This device is investigational and is currently in clinical trials approved by the U.S. Food and Drug Administration (FDA). For those interested in staying informed about Synchron&rsquo;s ongoing work and updates, please join the Synchron community:&nbsp;<a href="https://link.edgepilot.com/s/4239f747/ca21cbCpKkOSLI5ZXNqTdQ?u=https://www.synchronbci.com/StayConnected.html" data-linkindex="4" data-ogsc="">https://link.edgepilot.com/s/4239f747/ca21cbCpKkOSLI5ZXNqTdQ?u=https://www.synchronbci.com/StayConnected.html</a>

How Brain Computer Interfaces (BCIs) Could Help People with ALS Communicate

Today on Endpoints, Dr. Danielle Boyce joins us to explore how data science is transforming our understanding of ALS and why the ALS Research Collaborative (ARC) Study presents an exciting opportunity for research.

As ALS TDI’s Principal Investigator for Real-World Evidence, Dr. Boyce brings extensive expertise in analyzing big data to uncover key insights about ALS. Her work focuses on harnessing the vast amount of information collected through ALS TDI’s ARC Study, turning data into discoveries that could drive ALS research forward.

Today on&nbsp;Endpoints,&nbsp;Dr. Danielle Boyce joins us to explore how data science is transforming our understanding of ALS and why the ALS Research Collaborative (ARC) Study presents an exciting opportunity for research.
As ALS TDI&rsquo;s&nbsp;Principal Investigator for Real-World Evidence, Dr. Boyce brings extensive expertise in analyzing big data to uncover key insights about ALS. Her work focuses on harnessing the vast amount of information collected through ALS TDI&rsquo;s&nbsp;ARC Study,&nbsp;turning data into discoveries that could drive ALS research forward.

ALS TDI and Unite Genomics Partner to Bring Electronic Health Record Data into the ARC Study

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