Vivalink and RSRT collaborate to improve Rett syndrome research with wearable technology

By Liza Laws

- Last updated on GMT

© Getty Images
© Getty Images

Related tags Rett syndrome Genetics Rare disease wearable technology Research Patient centricity

In a major partnership aimed at accelerating research into Rett syndrome, a rare neurological disorder predominantly affecting girls, digital healthcare solutions company Vivalink, has joined forces with the Rett Syndrome Research Trust (RSRT).

The collaboration marks a significant stride towards shifting symptom assessment paradigms in Rett syndrome through the use of cutting-edge wearable technology.

Rett syndrome manifests with a range of challenges including speech impairments, motor skill deficiencies, and autonomic dysfunction, impacting vital functions such as breathing patterns, heart rate variability, and sleep. To address the critical need for objective symptom assessment and therapeutic development in Rett syndrome, RSRT is launching the Vibrant study, targeting autonomic dysfunction in affected individuals.

Central to this pioneering initiative is Vivalink's Multi-Vital ECG wearable technology, coupled with comprehensive data services for real-time monitoring of heart rate and oxygen saturation levels. By integrating the medical-grade remote monitoring devices into the Vibrant study, RSRT aims to validate digital solutions for monitoring vital parameters in pediatric patients with Rett syndrome.

Dr Jana von Hehn, chief scientific officer at RSRT, emphasized the transformative impact of digital monitoring technologies on both researchers and participants.

She said: “Partnering with Vivalink to measure symptoms digitally offers several advantages to us and the participants. 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."

Vivalink's advanced wearable devices offer up to 14 days of continuous real-time monitoring, capturing crucial parameters such as heart rate variability, respiratory rate, activity level, and posture. These insights not only enhance researchers' understanding of Rett syndrome but also pave the way for the development of early predictive biomarkers of disease-modifying therapeutics.

Aaron Timm, chief commercial officer at Vivalink, spoke about the collaboration and emphasized the company's commitment to driving meaningful advancements in Rett syndrome research.

“We are excited to partner with the Rett Syndrome Research Trust in their pioneering study,” Timm said.

“We hope to empower researchers with the tools they need to make meaningful advancements in understanding and treating Rett syndrome.”

Through this collaborative endeavor, Vivalink and RSRT aim to accelerate the development of effective treatments for Rett syndrome, bringing hope to individuals and families affected by this debilitating disorder.

Vivalink works with digital healthcare solutions for virtual patient care and decentralized clinical trials. Using unique physiology-optimized medical wearable sensors and software services, it says it enables a deeper and more clinical understanding between provider and patient.

According to the Mayo Clinic​, Babies born with Rett syndrome typically undergo an uneventful pregnancy and delivery process. During the initial six months of life, most infants appear to grow and behave in line with developmental expectations. However, signs and symptoms of Rett syndrome begin to manifest thereafter.

The most notable changes typically emerge between 12 to 18 months of age, often progressing rapidly over weeks or months. The presentation and severity of symptoms vary significantly from one child to another.

Key indicators of Rett syndrome include slowed growth, with brain development decelerating postnatally. Microcephaly, characterized by a smaller-than-average head size, may serve as an initial marker. Additionally, delayed growth in other bodily dimensions becomes evident as children age.

Progressive loss of movement and coordination abilities is a hallmark of Rett syndrome, with early manifestations including diminished hand control and declining mobility. This decline initially occurs swiftly, followed by a more gradual progression. Eventually, muscle weakness or stiffness ensues, accompanied by atypical movements and postures.

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