Rare Daily Staff
Healthcare technology provider Ciitizen said it entered into a partnership with the patient advocacy group STXBP1 Foundation to build a digital natural history for STXBP1.
The partnership makes use of Ciitizen’s Real World Evidence platform to enable 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 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. The data is then made completely accessible to researchers to study the disease and develop treatments. Additionally, Ciitizen said it provides patients with the opportunity to control their own data and who has access to it.
“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,” said Nasha Fitter, director of rare and neurological diseases at Ciitizen. “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 the patient’s Ciitizen data to improve the field’s understanding, diagnosis and treatment of STXBP1 Disorders.
“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,” said Charlene Son Rigby, president and co-founder of STXBP1 Foundation. “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 control of their data.”
Photo: Charlene Son Rigby, president and co-founder of STXBP1 Foundation
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