Hive Networks, IRSF Team Up to Create Digital Health Platform

Yedida Y Bogachkov PhD avatar

by Yedida Y Bogachkov PhD |

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Hive Networks, a digital health company, is teaming up with the International Rett Syndrome Foundation (IRSF) to provide a cloud platform to support patients, caregivers, and researchers in the Rett community.

The multi-year partnership — being announced in the midst of Rett Syndrome Awareness Month — aims to help create collaborations between patients/caregivers and research teams. The goal is to ensure that clinical and research work takes into account the needs and priorities of those most affected by the disease.

“Collaboration between health systems and inclusive of patients and their families is how we will make real progress on improving the lives of patients with rare and chronic conditions,” John Bostick, CEO and founder of Hive Networks, said in a press release.

“Our goal is to continue to scale and spread working communities of patients, clinicians, and researchers collaborating on improvements for every disease,” Bostick added.

Hive Networks’ HIPAA-compliant platform — which follows all current healthy privacy laws — will allow caregivers, clinicians, and researchers to bring together knowledge, experience, and expertise to solve problems in the Rett community, according to the partners.

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“In the past, everyone worked in silos. Now, there is a paradigm shift happening in healthcare that is proving that greater progress can be made through diverse collaboration of all those involved, across health systems,” Bostick said.

This cloud platform for the Rett community will support 15 partner clinics throughout the U.S. in the IRSF centers of excellence network, including the Boston Children’s Hospital, in Massachusetts, the Children’s Hospital of Philadelphia, in Pennsylvania, and the Texas Children’s Hospital, in Houston.

The platform will enable IRSF to collect clinical data and caregiver-reported information in the new Rett Syndrome Registry, building on the success of the Rett Syndrome Natural History Study. The natural history study already has collected nearly 15 years of data on more than 1,000 individuals.

“The technology infrastructure provided by Hive will allow IRSF’s Rett Syndrome Centers of Excellence throughout the country to collaborate, connect and share best practices and clinical outcomes to ensure patients with Rett syndrome have access to best-in-class care, no matter where they live” said Melissa Kennedy, CEO of IRSF.

“As a funder of research aimed at bringing curative therapies to the Rett syndrome community, our Foundation is committed to supporting a connected clinical network, ready to actively participate in clinical trials,” Kennedy added.

The IRSF is the organizer of Rett Syndrome Awareness Month, held each October to bring attention to the rare neurological disorder. Advocates and supporters have been posting on social media, participating in global fundraising efforts, and seeking new ways to support patients and their families.