Hive Networks & IRSF Partner to Advance Research and Treatment for Rett Syndrome

Hive Networks & IRSF Partner to Advance Research and Treatment for Rett Syndrome

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Hive Networks today announced a multi-year partnership with the International Rett Syndrome Foundation to provide a digital health platform to support the Rett community. Rett syndrome is a rare disease caused by a genetic mutation that affects 1 in 10,000  females and even fewer males.  

Hive Networks is a digital health company that lets patients and their families collaborate with clinicians and researchers to improve health outcomes, especially for those who suffer from rare and chronic diseases.  

Individuals with Rett syndrome are often unable to walk or talk, experience cardiac, respiratory, digestive, and muscular abnormalities, and may develop scoliosis and seizures. There is no current treatment or cure for the disease. 

For diseases such as Rett syndrome, it is necessary for health systems to combine data, experience, and expertise to improve the lives of patients. And it is important that this clinical work takes into consideration the needs and priorities of families and caregivers who live this every day and can share valuable insights. 

“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. Our goal is to continue to scale and spread working communities of patients, clinicians, and researchers collaborating on improvements for every disease,” said John Bostick, Chief Executive Officer and Founder of Hive Networks. “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.” 

Hive’s secure, HIPAA-compliant cloud platform will support the 15 partner clinics in the IRSF Center of Excellence Network and enable collaboration between Rett syndrome specialists, patient caregivers, and researchers. The platform will enable IRSF to build on the success of the Rett Syndrome Natural History Study and collect clinical data and caregiver reported information in the new Rett Syndrome Registry™. Designated Centers of Excellence include the top three pediatric hospitals in the country: Boston Children’s Hospital, Children’s Hospital of Philadelphia, and Texas Children’s Hospital. 

“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, IRSF CEO. “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.” 

Learn more about working communities at https://www.hivenetworks.com/workingcommunities.

About Hive Networks 

Hive Networks facilitates the exchange of knowledge, experience, and expertise to solve problems. The  firm helps its clients bring patients, clinicians, and researchers from across the country and around the  world together in a working community with a relentless focus to improve lives and outcomes. The firm  was founded in 2019 with technology licensed from Cincinnati Children’s Hospital and the Institute for  Healthcare Improvement (IHI) with funding provided by a range of public and private investors. Learn  more at www.hivenetworks.com. 

About International Rett Syndrome Foundation 

The International Rett Syndrome Foundation (IRSF) is the leading research and empowerment  organization for Rett syndrome. Investing over $51 million into research which has advanced  therapeutics to clinical trials, including Rett syndrome’s first-ever phase 3 clinical trial. IRSF is reaching  its vision to create a world without Rett syndrome by developing a robust pipeline of treatments and  empowering families with information, knowledge, and connectivity. Further information can be found  at www.rettsyndrome.org. 

October is Rett Syndrome Awareness Month and the IRSF will be holding their 2nd Annual Raise a Glass  For Rett Virtual Gala on November 6th at 8:00 PM EDT to help raise $250,000 to get closer to a world  without Rett. Be inspired by stories from the Rett community, hear from IRSF leadership, learn about  the incredible work that the foundation is doing to accelerate research and empower families. The gala  includes musical performances by country legend Clint Black, Grammy award-winning composer Mateo  Messina, and Makayla Phillips, finalist on America’s Got Talent and American Idol. Learn more at  www.rettsyndrome.org/gala.

We’re Hiring!

The International Rett Syndrome Foundation (IRSF) is looking for a passionate storyteller and marketer to advance our mission of accelerating research and empowering families affected by Rett syndrome.

 

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