ALS respiratory data now available to researchers worldwide
Database incorporates information from Target ALS, Zephyrx
A database integrating long-term respiratory data with natural history data from people with amyotrophic lateral sclerosis (ALS) has been made available to scientists globally, with the hopes of accelerating research and the discovery of new therapies.
Developed under a collaboration between the nonprofit Target ALS and Zephyrx, the database features respiratory function data collected remotely and over time using Zephyrx’s at-home spirometry technology. As of August, 68 patients were using the technology to collect measures of lung function as their disease evolves. The goal is to have 100 patients contributing to the database.
The database will integrate the Target ALS Natural History Study, a biosample and dataset collection aimed at informing discovery and research efforts. Data from the natural history study is freely available to scientists via the Target ALS Data Engine.
“Partnering with Zephyrx is a significant step forward in our mission to break down barriers and expedite ALS research,” Amy Easton, PhD, senior director of scientific programs at Target ALS, said in an organization press release. “The integration of Zephyrx’s respiratory data into our Data Engine will enhance the scope and quality of information available to researchers, fostering greater collaboration and innovation.”
Understanding ALS progression
ALS is a neurodegenerative disease marked by the progressive loss of muscle function, which impairs a person’s ability to walk, talk, eat, and eventually breathe.
Zephyrx’s at-home spirometry test measures how much air a person can breathe in and out and how easily and fast they can breathe out. The results are stored in a cloud-based infrastructure, allowing physicians to access it from anywhere in the world in real time.
“With its intuitive interface and real-time data-sharing capabilities, study teams are enabled to capture lab-quality digital endpoints from patients while they remain safe and comfortable at home,” which is “crucial in the fight against ALS,” Target ALS said.
The dataset includes information from both ALS patients and healthy controls, with the aim of helping researchers analyze and identify possible signs of respiratory decline in ALS.
“We’re thrilled to be part of this initiative at the forefront of digital health innovation and ALS research,” said Mike DiCesare, president of Zephyrx. “Target ALS’s Data Engine is a powerful tool for the ALS research community, and it’s a privilege to leverage our digital spirometry platform to obtain lab-quality data from ALS patients while they remain safe and comfortable at home.”
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