RARE Daily

Rett Syndrome Research Trust Partners with Vivalink to Accelerate Research

April 25, 2024

Rare Daily Staff

Digital health technology provider Vivalink entered into a collaboration with the Rett Syndrome Research Trust to advance research into the rare, neurological disorder.

Under the partnership, Vivalink is providing its Multi-Vital ECG wearable technology and data services for heart rate and oxygen saturation monitoring to support the patient advocacy organization’s new VIBRANT study, which seeks to assess autonomic dysfunction in individuals with Rett syndrome.

Rett syndrome is a genetic disorder affecting primarily girls, causing increased issues with speech, motor skills and autonomic dysfunction, which impacts their breathing patterns, heart rate variability, sleep, and overall health.

Vivalink’s advanced wearable devices provide an opportunity to expedite drug development in the pursuit of a cure for Rett Syndrome. These devices offer up to 14-day continuous real-time monitoring of parameters such as heart rate variability, respiratory rate, step count, activity level and posture, providing valuable insights into the health and well-being of individuals with Rett Syndrome.

Not only do these devices permit monitoring of symptoms that are not easily observed or quantified, but they also provide the potential to develop early predictive biomarkers of disease-modifying therapeutics.

The VIBRANT study will enroll 25-35 pediatric patients and seeks to validate innovative digital solutions for monitoring these vital parameters. By leveraging Vivalink’s medical-grade remote monitoring devices, Rett Syndrome Research Trust aims to develop objective measures of symptoms, supporting the clinical development of potential therapeutics.

“Partnering with Vivalink to measure symptoms digitally offers a number of advantages to us and the participants,” said Jana von Hehn, chief scientific officer at Rett Syndrome Research Trust. “For example, the interface of the wearable devices allows families to access real-time data, providing them with valuable insights into their loved one’s health. Additionally, digital technologies alleviate the burden on caregivers by automating the process of data collection, reducing the need to manually record and recall information.”

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