World-leading, ANZ-developed IBD patient data platform establishes its global value by partnering with ‘Top 5’ Pharma company

Crohn’s Colitis Cure (CCCure) today announced its first subscription member to its world-leading inflammatory bowel disease (IBD) clinical management system, Crohn’s Colitis Care (CCCare). The announcement comes ahead of presenting significant CCCare insights on the burden of disease at the European Crohn’s and Colitis Organisation (ECCO) congress.

The membership enables access to the world’s largest pool of continuously refreshing, realtime IBD patient and clinical data, plus analytics. This data will enhance pharmaceutical company research and development in the space through a better understanding of unmet patient needs.

Thus, leading to increased access to innovative therapies and more patient-focused care in the multiple markets affected by this globally expanding, burdensome disease.

The growing burden of IBD and importance of patient data for finding solutions

IBD is a complex, chronic disease with no cure¹. It requires specialist, multi-disciplinary care, has a significant impact on the health system and lifelong burden of disease on the patient². Rates of IBD are rising globally and within younger demographics³.

New Zealand has one of the highest rates of IBD in the world, with more than one in four people experiencing symptoms⁴. As such, organisations are looking to ease the economic and quality of life burden through the development of innovative therapies. Bill Petch, CEO of CCCure, the not-for-profit charity that developed and manages the world-first Crohn’s Colitis Care (CCCare) platform, said:

“The key to unlocking the potential for personalised, targeted and effective therapies is access to real-world IBD patient data and insights, which will help inform regulatory approvals and speed to access.

“IBD is emerging in parts of the world and demographics it has never been seen before, so equity of access to proven therapies and the need for a more personal, patient-focused approach to care is crucial, in New Zealand, Australia and globally.”

The role and benefit of CCCare in IBD and novel therapies

CCCare is an IBD clinical management system that incorporates a clinical quality registry (CQR), drawn from decades of experience working with individuals affected by the disease. It currently has approximately 300 clinical users and 14,500 patient records. This represents over 45,000 clinical encounters and around 30,000 patient years of data. It is the largest, dynamic structured data set in New Zealand and one of the largest globally. CCCare also continually refreshes and grows with every patient and clinician interaction, making it an ever-expanding source of knowledge for researchers, policy makers and others across the IBD space who wish to access it.

It is a patient tool used at point-of-care but the de-identified data is now also available to third parties that can help improve the outlook for IBD for as many people, in as many places, as possible.

Mr Petch, continued:

“By making CCCare’s real-world evidence readily available to commercial and research partners, CCCare can provide insights that would normally be difficult and costly to access. Rather than keeping it locked away, we’ve opened it up so we can improve IBD care right now.

“This invaluable knowledge and access to experts, resources and tailored reports will generate a deeper understanding of IBD, supporting the provision of more innovative, effective, patient centred therapies. We are already in advanced discussions with other commercial partners and hospitals around the world to help make this happen.”

CCCare in the clinical IBD setting

CCCare was first used in 2018, to improve patient management and quality of IBD care by enabling better data capture and management.

It is used to directly document routine care as an electronic medical record (EMR). It incorporates a consumer portal so patients can self-report and share important information directly with the clinical teams and have it saved in the CQR. This is combined with comprehensive clinical information, so that a holistic and truly patient-centric view of care is captured, including patient-reported, clinical data. Soon it will also link to biological data.

All patient data that is shared externally and with CCCare members is de-identified.

Professor Jane Andrews, Chair of CCCure and a leading gastroenterologist, said:

“CCCare was created for IBD patients by IBD clinicians and the patients themselves, using cloud-based technology. The patient and their IBD doctor, nurse, psychologist or dietitian have access to all the same information, at the same time, anywhere in the world. There is no delay in finding files or dealing with inaccuracies or gaps in details. The result is more, quality time spent on consulting and helping patients.

“CCCare is available in over 20 adult and paediatric sites around New Zealand and Australia, and it is growing. There are 10 additional New Zealand and Australia sites looking to introduce the platform and it is currently being evaluated in the US, Europe, Japan and UAE. IBD is a borderless disease, without a cure. To find a cure the IBD community must work together, across different parts of the world, so as many IBD patients as possible can benefit from it. CCCare is designed to allow this global collaboration.”

Professor Richard Gearry, Director at CCCure and Consultant Gastroenterologist at Christchurch Hospital, said:

“CCCare has a strong connection with New Zealand and its IBD community. Christchurch Hospital pioneered using the platform when it became available and now it is used in multiple sites across the country. The data and learnings it receives from New Zealand clinicians and patients continues to shape its development to this day, for the benefit of people here and around the world.”

CCCare will feature heavily at this year’s European Crohn’s and Colitis Organisation (ECCO) congress and Digestive Disease Week (DDW) conference. Abstracts based on CCCare’s data and analytics have been accepted for presentation.