Rett Syndrome Research Trust nets $500K to study Emerald biosensor

Award will fund study into the device's ability to assess therapies remotely

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by Joana Vindeirinho, PhD |

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The Rett Syndrome Research Trust (RSRT) was granted $500,000 to help test the Emerald biosensor’s ability to accurately measure symptoms of Rett syndrome.

The donation was provided by Alba Tull, chair of the Tull Family Foundation and founder of First Light Capital Group. It will fund a clinical study to evaluate whether the biosensor can be reliably assess the effectiveness of therapies in clinical trials and to manage symptoms in clinical care.

“RSRT continues to set and drive Rett syndrome research, and this donation is a reflection of my confidence in their singular mission to cure Rett,” Tull said in a press release.

Rett syndrome is a rare neurodevelopmental disorder occurring almost exclusively in girls and mainly caused by mutations in the MECP2 gene. The disease is characterized by a loss of hand function and speech, but other symptoms include motor, cognitive, sensory, and emotional problems, as well as respiratory, sleep, and digestive complications.

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Testing the Emerald biosensor

The Emerald biosensor is a freestanding, touchless monitoring device that’s set up to collect data passively. Developed by Dina Katabi, PhD, professor of electrical engineering and computer science at the Massachusetts Institute of Technology and co-founder of Emerald Innovations, it monitors radio waves in a room and uses data processing methods such as machine learning to measure physiological information, such as breathing, sleep patterns, and movement, that’s affected in Rett syndrome.

Emerald has been used to develop new therapies for other diseases, such as Alzheimer’s and Parkinson’s. Before it can be used to advance new Rett therapies, its effectiveness at accurately measuring Rett symptoms must be validated.

RSRT had funded a pilot study of Emerald that suggested it is feasible with Rett syndrome and yielded a reliable assessment of breathing and sleep disturbances. Tull’s donation will allow more testing to see if the device can remotely measure key Rett symptoms as well as current methods.

“As an ardent supporter of women in science, I am thrilled to be able to direct this donation to support Dr. Katabi’s innovative work while advancing the ability to effectively test medicines for Rett syndrome,” Tull said.

RSRT CEO Monica Coenraads said Tull’s donation comes at a “transformational moment” for Rett syndrome, for which two gene replacement clinical trials have been approved.

“Her support of the Emerald validation study accelerates our agenda to revolutionize the way clinical trials are designed for Rett. She is a passionate supporter of our cause and has my deep gratitude and admiration,” Coenraads said.

Since being established in 2008, RSRT has awarded $66 million to Rett research. The nonprofit organization notes that all biopharmaceutical companies working on curing Rett syndrome have used discoveries and resources that received RSRT funding.

Tull has served on the RSRT’s board of trustees since 2016 and has been a donor to the organization as well. Her involvement with Rett syndrome began when a friend’s daughter, Sadie, was diagnosed with the disease.

“The more I learned, the more I realized how devastating Rett is and how many families are impacted by this life-changing disease. Through Sadie, I’ve learned about the promising research potential for Rett. RSRT has made amazing progress so far and I am confident that RSRT has the ability to truly change lives,” Tull said.