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An Update on the New Rett Digital Natural History Study: How Our Children’s Medical Records Created a Decades-Long Study in Months

April 12, 2023

Advancements in technology are making it possible to conduct studies in months that historically took decades. By allowing access to their children’s medical records, 119 Rett parents have made it possible to begin to create a digital natural history study in a short period of time.

Our Chief Scientific Officer, Jana von Hehn, PhD was joined on April 11, 2023 by Rett experts Bernhard Suter, MD, medical director of the Rett Center at Texas Children’s Hospital and Cary Fu, MD, medical director of the Rett Syndrome Clinic at Vanderbilt Children’s Hospital in presenting preliminary information from the digital natural history study and how the data is reconciling with the traditional natural history study that spanned 15 years and included over 1000 patients.

Our data scientist, Kristina Hone, briefly shared how the data from the medical records is extracted and aggregated to form the digital dataset. RSRT CEO, Monica Coenraads, explained how parents have access to their child’s medical records in one convenient platform by providing a virtual tour of the parent portal. A Q&A session follows the presentation.

We thank the 119 parents who have shared their children’s medical records. There is power in numbers so we encourage as many parents as possible to join our digital natural history!



Complete webinar slides

More Resources

Sign up for the digital natural history study through Ciitizen

Learn more about the digital natural history study

Blog: Cures for Many Rare Disorders Will Come More Quickly Because of Digital Natural History Studies


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