Crohn's
Colitis
Care
Crohn’s Colitis Care (CCCare) is a world-leading, technology-based, data-driven solution designed to tackle the complex challenges faced by people with IBD, their clinicians, and the organisations striving to create access to innovative treatments.
CCCare is used to directly document routine care as an Electronic Medical Record (EMR). It incorporates a consumer portal so people with IBD can self-report and share important information directly with the clinical teams.
This granular clinical information is de-identified and flows to the Clinical Quality Registry (CQR). Here it combines with other, clinician-entered information, so that a holistic and truly patient-centric view of care is captured.
CCCare has over 330 clinical users and over 15,300 records from people with IBD, representing over 60,000 clinical encounters and around 70,000 years of people’s data (as at August 2024). It is the largest dynamic structured dataset in Australia and one of the largest and most detailed globally.
With every clinical interaction, CCCare refreshes and grows, becoming an ever-expanding source of knowledge for researchers, policymakers, funders and others in the IBD space.
CCCure takes patient privacy and CCCare’s privacy and cybersecurity obligations under the Australian Privacy Act and other applicable legislation seriously. Please rest assured that our policies, processes and practices are fully compliant with our legal obligations.
CCCare is most beneficial and available for the following users:
- People with IBD benefit from the consumer-facing portal that enables self-reporting, record management anywhere and anytime, and will soon provide new, world-first access to features like personalised IBD information and direct communication with treating teams.
- Clinicians benefit from the CQR that provides the most up-to-date, accurate and immediate access to clinical quality, holistic information on people living with IBD for enhanced consultations and care.
- Researchers and Developers benefit from the most granular, ever-expanding, real-time consumer IBD data and analytics derived from the platform’s EMR and CQR. This unique information will benefit healthcare practice and policy creators, service providers, hospitals, insurers, pharmaceutical manufacturers and more.
Discover more about CCCare’s game-changing benefits for people with IBD, clinicians, and commercial partners below. You can also learn about its exciting next evolution and how you can help co-create it.
CCCare for IBD Clinical Management
For people with IBD, managing multi-disciplinary care can be complex, with data and records scattered across various stakeholders and systems. There is no simple way for people to self-manage their health data, treatment history, and care program across different clinicians over the years.
CCCare addresses this challenge by providing people with IBD and their doctors, nurses, psychologists, dietitians and others, with simultaneous access to the same information. This eliminates delays, inaccuracies, and gaps in details, resulting in more quality time spent on consultation and care.
Key clinical management features include:
- Electronic Medical Record (EMR) with Privacy Safeguards: Manages individual care and captures ongoing, structured data from each person that uses it.
- Clinical Quality Registry (CQR): Stores structured, deep, de-identified longitudinal data for specific and targeted insights, which can be combined with genetic and biomarkers from stored samples.
- Research Database: Houses extended data with ethics-approved focus, including genetic data and other advanced analyses.
- A portal through which the person with IBD and clinician can update and retrieve consultation notes, medications and treatment program updates.
CCCare is available in over 20 adult and paediatric sites across Australia and New Zealand, with plans for further international expansion.
Ongoing Evolution in IBD Care: A World-First Consumer App
CCCare continues to evolve and is doing so as part of a world-first project supported by people with IBD and clinicians globally.
People with IBD want greater control and access to their own health data and personalised information. Making this democratisation of healthcare a reality requires a transformation in the way things are done.
CCCure’s new, cloud-based consumer app is creating this transformation. It enables accessible, personalised care by integrating the consumer-reported data linked with clinical records – made possible through CCCare – to provide tailored information and support for each individual and their unique needs (e.g. nutrition, medications, side effects, research, access to clinical trials).
The new consumer app marks the latest in a series of innovations around CCCare, following the successful launch of paediatric functionality in 2022-2023. The paediatric update addressed the needs of individuals who develop IBD before the age of 18. With those under 18 years making up 10 per cent of the Australian IBD population, CCCare’s combined paediatric and adult features offer a comprehensive, lifelong solution for managing IBD.
The exact features of the new consumer app – which will incorporate the adult and paediatric CCCare features – will be confirmed following consultations with the IBD community to ensure it meets needs. It is expected the app might provide the following benefits:
- Globally accessible via web browsers, smartphones and tablets.
- Instantly access up-to-date personal health data, records, and treatment programs anywhere in the world.
- Receive personalised, curated clinical information and resources tailored to their needs.
- Communicate directly with their treating team.
- Have the potential to integrate with other health systems, data sets, and devices for real-time support.
CCCure is initiating an extensive local and international consultation process to co-design and build the app with all stakeholders, including people with IBD, carers, clinicians, researchers, and relevant organisations.
Contact [email protected] to participate in the consultation process.
The consumer app is expected to be ready for pilot testing in 2025, with the project being co-led by Professors Jane Andrews and Susan Connor, who are both also Directors of CCCure.
This initiative, and CCCare’s paediatric functionality, are both possible thanks to grants from The Leona M. and Harry B. Helmsley Charitable Trust, based in the USA.
Access to CCCare Data and Analytics
Crohn’s Colitis Cure’s dual aims are to optimise care and be instrumental in cure.
There is growing demand for comprehensive, real-time data to enhance outcomes for people with IBD and drive advancements in IBD research and development. CCCare is uniquely positioned to provide granular and truly patient-centric data currently available via its linked Clinical Quality Registry (CQR).
Unlike other traditional, static registries, CCCare is a living, real-time data platform that continuously refreshes and grows with every interaction between a person with IBD and a clinician, making it an ever-expanding source of knowledge. CCCare’s advanced, cross-vertical integration links clinical, consumer-level and biological data, which will fundamentally transform scientific exchanges and evidence generation.
Such data will inform the strategic direction and help unlock deeper insights for research and development, health campaigns, regulatory submissions and more.
The platform’s data and analytics have been prominently featured at major congresses, conferences, and symposia, underpinning numerous abstracts and presentations.
By making real-world evidence readily available to partners, CCCare can provide insights and that would normally be difficult and costly to access. This invaluable knowledge will generate a deeper understanding of IBD, supporting the provision of more targeted and effective therapies.
Organisations interested in benefiting from CCCare’s data and analytics should contact [email protected].