Partnership supports the long tail of rare diseases and breaking down data silos to accelerate treatments
A collaboration between 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 RARE-X, a collaborative platform for patient controlled and structured data collection, global data sharing and enabling large data analysis, will allow RARE-X patients to seamlessly take advantage of Ciitizen’s healthcare data infrastructure platform. Patients will be able to collect and store their medical records, which are then turned into computable, digital, and relevant datasets that can be shared at the patient’s discretion.
With more than 9,500 rare diseases worldwide, ultra-rare disease groups struggle to compile rich, longitudinal, patient and caregiver reports and clinical natural history data. This information is critical for patients and their doctors to better understand their diseases, entice researchers and biopharma to invest in their diseases, and find clinical endpoints. This collaboration will not only help break down data silos to make rich natural history data accessible to rare disease groups and researchers, but will also give patients sole control over their data and who has access to it.
“We chose Ciitizen as one of our key partners to supplement patient-reported outcomes data in support of creating rich natural history studies for rare disease groups,” said Nicole Boice, RARE-X co-founder/executive director. “Ciitizen shares the same mission and commitment to patients as we do, and we are honored to be collaborating with them to provide patients the ability to interconnect their data making it easily accessible for researchers.”
RARE-X recognizes the many data gaps that exist in the rare disease ecosystem, and understands the importance of data sharing and data interoperability to accelerate research and treatment development. RARE-X offers an automated and structured platform to support research-ready data collection, while ensuring that both governance, consent and technology can support breaking down data silos, and building a data ecosystem of discovery for rare disease.
“It is daunting for caregivers and patients of ultra-rare diseases to take on the heavy task of finding a cure. Biotech companies are not investing in these diseases without a lot of de-risking, and that burden falls on afflicted families. This includes patient data collection, basic science and drug development. The collaboration between Ciitizen and RARE-X is a major step to make the process of building natural history studies easy for these groups, ” said Nasha Fitter, director of rare and neurological diseases at Ciitizen.
After collecting the patient’s electronic health data, Ciitizen will use its proprietary machine learning platform to turn their largely unstructured health records into computable, regulatory-grade, research-ready data. A pilot integration is underway this year for specific groups on the RARE-X platform. These rare disease groups will benefit from:
- Patient registry and validated surveys
- Collection of medical records and imaging of the patient population
- Regulatory-grade, research-ready aggregate patient data
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