The FOXG1 Research Foundation Announces the Launch of its Global Patient Registry to Accelerate Research For the Rare Genetic Disease, FOXG1 Syndrome

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Celebrating Rare Disease Day 2019, The FOXG1 Research Foundation, today, launched the critically important FOXG1 Syndrome Patient Registry developed in collaboration with Stanford University and digital health company, Beneufit. This FOXG1 global patient registry is among the most comprehensive and technically sophisticated registries in the rare disease space and is the vital step in helping researchers and caregivers understand the complexities of the disease. The FOXG1 Syndrome Patient Registry can be found at https://foxg1.beneufit.com.

FOXG1 syndrome is a rare neurological disease that affects approximately 500+ children worldwide, with the diagnosis rate growing at 100% year. For all rare disorders to move forward towards clinical trials, it is critical to acquire data from the worldwide population of patients. The registry is launching with English, Spanish, German and French languages; Mandarin and Portuguese will be launched shortly after.

The registry will take approximately 20 minutes to complete and real-time population data is displayed in an effort to educate and engage the parent/caregivers. The de-identified data will be accessible to parents/caregivers and researchers worldwide. This data will help advance the understanding of FOXG1 syndrome and contribute to the development of much-needed therapies not only for FOXG1 syndrome, but also for diseases related to the FOXG1 gene such as autism, Alzheimer’s, epilepsy, brain cancers and more.

The registry’s patient-centric approach is unique in that it provides insight into the disease while the patient’s profile is being completed. Real-time data is displayed in the form of user-friendly charts so parents come away with an understanding of the locations, genetic mutations, and developmental profiles of the entire FOXG1 population and how it relates to their child.

A global patient registry is critical in order to be considered for clinical trials. According to co-founder Nicole Johnson, “If we are seeking any viable treatments for FOXG1, the first thing a pharmaceutical company asks is do you have a strong global registry?”

In addition to gathering demographic, genetic and developmental data, the caregiver is able to securely upload genetic reports and other documents that will fast-track research insight.

“We selected Beneufit to develop the registry because of their patient-centric approach to understanding the complexities of another complex disease, Parkinson’s disease and their experience producing digital studies for world-class organizations such as Johns Hopkins University School of Medicine,” explains CEO, Nasha Fitter.

“We’ve put a lot of effort into developing our research platform and the collaboration with the FOXG1 Research Foundation enables us to provide a similar services to other rare disease organizations who need high-quality and cost-effective patient registries,” said Beneufit CEO Jeff Broderick.

About The FOXG1 Research Foundation (FRF)
The FOXG1 Research Foundation was founded in 2017 by three moms whose children were born with the rare neurologic disorder called FOXG1 syndrome. Along with a team of FOXG1 parents from across the globe, The FOXG1 Research Foundation is accelerating research to find a cure for every child in the world with FOXG1 syndrome. FRF is dedicated to raising money to fund the world's leading scientists that are integral along the strategic Path to a Cure.  FOXG1 is a transcription factor gene that is linked to many brain disorders, affecting millions of patients, such as autism, Alzheimer’s, schizophrenia, brain cancers, and more. FRF will continue to apply its research to solve all related disorders. More information is available at https://www.foxg1research.org.

About Beneufit, Inc.
Beneufit is a digital health company whose goal is to improve outcomes by providing real-world insight into disease treatment plans, symptoms and side-effects. More information is available at https://www.beneufit.com.

Media Contact:
Nicole Johnson
Co-Founder & President, FOXG1 Research Foundation
nicole(at)foxg1research.org

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Nicole Johnson
@beneufit
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