PALO ALTO, Calif. & PHILADELPHIA – Ciitizen, a healthcare technology company that helps patients get full control of their medical records to access better treatment options including participation in research and clinical trials, and the STXBP1 Foundation, a patient advocacy group dedicated to finding a cure for STXBP1 Disorders, today announced a partnership to build a digital natural history for STXBP1. This partnership enables the collection of medical records and images for 150 patients, along with the normalization of records around key data elements.
Understanding the natural history of a disease is an essential element to inform drug development. For rare diseases and patient advocacy organizations, it is costly and difficult to acquire, manage and connect the patient data needed for advancing research and treatments. Through Ciitizen’s groundbreaking machine learning platform, the STXBP1 Foundation will be able to provide its research community with computable, regulatory-grade, research-ready data from real-world, largely unstructured, patient health records — including a collection of medical records and images of the patient population. This data is then made completely accessible to researchers to study the disease and develop treatments. Additionally, Ciitizen provides patients with the rare opportunity to control their own data and who has access to it.
“We are very excited about this collaboration,” said Nasha Fitter, director of rare and neurological diseases at Ciitizen. “The STXBP1 Foundation is forward-thinking and understands the importance of patient data for therapy development. As a rare disease parent myself, I know first-hand the importance of getting deeper, richer, longitudinal data on patients in the hands of researchers, and quickly. We believe this approach can be extended to all other disorders, opening up the possibility to find treatments for over 7,000 rare diseases in a fast and cost-effective way.”
The Ciitizen platform provides consenting patients with the ability to share identifiers from any registry or other platform they are on, enabling multiple sets of data to be connected. This is a critical step towards breaking down the silos of data being stored across various platforms. The STXBP1 community already collects patient-reported outcomes and survey data through an existing registry platform, and this information will be connected to patient’s Ciitizen data to improve the field’s understanding, diagnosis, and treatment of STXBP1 Disorders.
Charlene Son Rigby, president and co-founder of STXBP1 Foundation said, “We are thrilled to partner with Ciitizen on this initiative. We believe in the power of data and how important it is in the journey to finding a cure for STXBP1 Disorders. This collaboration will open up an entirely new approach for our Foundation and patient community. The combination of Ciitizen’s structured medical record data, and our existing registry platform’s deep information from patients and caregivers, will provide doctors and scientists with an innovative way to accelerate understanding of natural history while empowering patients to take control of their data.”
Ciitizen is a leading consumer health technology company whose mission is to help patients get full control of their medical records to access and find better treatment options including participation in research and finding clinical trials. As a patient-directed care platform, Ciitizen believes patients should have full control of directing the use of their data, which serves as one of the richest sources of real-world evidence, unlocking new options for patients and the community. For more information, contact [email protected] and visit http://ciitizen.com/research.
About STXBP1 Foundation
STXBP1 Foundation is dedicated to finding a cure for STXBP1 Disorders while improving the lives of our patients and families. Founded in 2017, STXBP1 Foundation is a parent-led advocacy organization. STXBP1 Disorders are rare epileptic and neurodevelopmental disorders caused by changes in the STXBP1 gene. With an incidence of approximately 1 in 30,000 live births, STXBP1 Disorders are one of the most common genetic causes of epilepsy. For more information, contact [email protected] and visit https://www.stxbp1disorders.org/.