Crohn's Colitis Cure (CCCure), an Australian-based non-profit organization, recently launched subscription-based access to a registry of data on patients dealing with inflammatory bowel disease.
The IBD-focused charity claims to have the world's largest database of real-time patient-reported and clinical data on IBD, including Crohn's disease, ulcerative colitis and undiagnosed IBD.
function
The company's clinical management system, Crohn's Disease Care (CCCare), features an IBD-specific EMR that facilitates near real-time documentation of care. It holds Australia's largest structured dataset, with approximately 300 clinical users and his 14,500 patient records, representing over 45,000 clinical experiences and approximately 30,000 patient-years. Masu. Introduced in 2018, the EMR is available at the point of care and is continuously updated with each patient-clinician interaction. Additionally, he claims CCCure can also be used as a guided practice tool, unlike a typical EMR.
The system also features a consumer portal where patients can self-report and share their health information with clinical teams.
CCCare operates as a standalone cloud-based system that can be accessed via a web browser to generate care plans and consultation letters that can be uploaded to other clinical management systems or emailed to clinicians anywhere. Masu.
Patient-reported clinical data is also linked to the Clinical Quality Registry (CQR), where it is automatically anonymized/anonymized.I have a job Progress to include bBiological data in the system.
CCCare is currently used in more than 20 IBD clinics in Australia and New Zealand, with a further 10 clinics in the process of implementing it. It is also being evaluated in medical settings in the United States, Europe, Japan, and the United Arab Emirates.
CCCure recently partnered with a major pathology vendor to enable live integration of pathology results into CCCare. The company also arranges data output to the Australian Government's My Health Record and direct EMR integration with major hospitals.
Why is it important?
IBD cases are on the rise. Nearly 5 million people were living with the disease in 2019, up from 3 million over the past 30 years. within the same period, Infections in Asia showed an increasing trend.
Because there is no established treatment, IBD patients require lifelong specialist multidisciplinary care. Efforts continue to find individualized, targeted, and effective treatments for IBD. For Bill Petch, his CEO at CCCure, the key is access to his real-world IBD data and insights.
„IBD is occurring in some parts of the world and in demographics never seen before, necessitating equitable access to proven treatments and a more personal, patient-centered approach to care.“ „It's extremely important for Australia, New Zealand and globally,“ he said. Up to 300,000 people in Australia could be affected by the disease by 2030.
CCCare can provide “insights that are typically difficult and costly to access,” Petch continued. „Instead of keeping it locked up, we opened it up so we can improve IBD care right now.“
As CCCure exposes its large database to the world, it secures patient and clinical data with multi-factor authentication, role-based security, Azure Active Directory integration, HTTPS access, row-level security, and dynamic data masking. We employ various measures to protect you. , transparent data encryption, comprehensive logging and reporting of user actions. It also features geolocated cloud storage, undergoes annual penetration testing, and segments identifiable data from your site. Additionally, it has strict protocols to detect anomalous usage patterns.
The company is currently in detailed discussions with commercial partners and hospitals around the world for inclusion in the IBD Registry. A major pharmaceutical company recently subscribed to his CCCare data for research and development for the first time.
market snapshot
Efforts are underway around the world to transform data into insights that lead to more effective strategies for managing IBD. For example, Israeli startup Cytreason has partnered with Swiss drug company Ferring Pharmaceuticals to develop a new treatment for IBD.they are building CytoReason’s AI-powered cell-centric disease model and leverage public and proprietary molecular data to address IBD at the cellular level.
On the other hand, CCCure admits that: Its „versatile“ clinical management system could be adapted to other disease pathways in the future. “While our focus remains on optimizing inflammatory bowel disease treatments, we recognize that in the long term the impact of our model may extend to other areas of medicine. ”
On record
“Real-time access to data and insights is critical to revolutionizing IBD management towards a personalized and targeted approach. Schedules are unrealistic for patients who require optimal care today. CCCare's approach requires continuity of care. Audit findings accelerate integration of cutting-edge knowledge into clinical practice This will not only improve the quality of care for IBD patients by enabling healthcare providers to immediately provide more effective and customized care, but will also improve our ability to find a cure. Our collective journey also moves forward. The urgency of optimizing care now and contributing to the pursuit of a cure highlights the importance of access to real-time data in transforming IBD management.“ Jane・Mary Andrews said. Chairman of the Board of CCCure and clinical professor of University of Adelaide Faculty of Medicine.