VIBRANT study to test ways to monitor Rett syndrome symptoms

Rett Syndrome Research Trust teaming up with industry, academia partners

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The Rett Syndrome Research Trust (RSRT) is teaming up with partners in industry and academia to get ready for a study called VIBRANT, which plans to test innovative ways to measure and potentially monitor the symptoms of Rett syndrome in patients, with a focus on autonomic dysfunction.

The autonomic nervous system is responsible for regulating unconscious bodily processes, like breathing, heart rate, and digestion. Autonomic dysfunction in Rett syndrome can contribute to many of it symptoms — including sleep problems and breathing issues.

The VIBRANT study aims to assess the validity of novel technologies that can be used to measure autonomic dysfunction with less burden on patients.

According to a press release from the RSRT, the study’s ultimate goal is “to develop direct and objective measures of symptoms that support and expedite the clinical development of curative therapeutics.”

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To support the study, the RSRT is teaming up with a number of companies behind state-of-the-art noninvasive monitoring technologies. These include Emerald Innovations, which makes no-contact devices designed to monitor patients’ sleep and movement patterns via radio waves in the home, and Vivalink, which produces wearable devices to monitor heart rate and oxygen levels in the blood.

Also collaborating on the study are VivoSense, which is helping RSRT manage breathing-related data, and researchers at academic institutions including two in Atlanta: Emory University and the Georgia Institute of Technology.

Most recently, the RSRT announced that PMD Solutions had agreed to donate its RespiraSense devices for the study. RespiraSense, which has been cleared for use by the U.S. Food and Drug Administration, is a wearable sensor designed to track breathing patterns.

“We are thrilled that PMD Solutions will contribute in such a meaningful and selfless way,” said Jana von Hehn, PhD, chief scientific officer at the RSRT.

“PMD Solutions is dedicated to serving patients and we are excited to align on this mission for Rett,” von Hehn said.

By providing our [PMD Solutions] RespiraSense devices and analytics, we aim to advance RSRT’s research efforts, enhance their understanding of autonomic dysfunction in Rett syndrome, and support faster development of a cure for Rett syndrome.

Myles Murray, the founder and CEO of PMD Solutions, said the company is “committed to leveraging our technological expertise to improve healthcare outcomes.”

“By providing our RespiraSense devices and analytics, we aim to advance RSRT’s research efforts, enhance their understanding of autonomic dysfunction in Rett syndrome, and support faster development of a cure for Rett syndrome,” Murray said. He added that PMD also is “thrilled” by the partnership with the Rett Syndrome Research Trust, calling the VIBRANT study “innovative.”

No details were provided at this time as to when the study will get underway or what its parameters will be.