Access granted: Largest reservoir of IBD patient data unveiled with membership

Pharma News: In inflammatory bowel disease (IBD), the consistency in adhering to evidence-based management varies, resulting in suboptimal patient outcomes and increased healthcare utilisation. Developed by gastroenterologists, the Crohn’s Colitis Care (CCCare) clinical management system has secured its inaugural subscription member.

CCCare owes its existence to the funding support from the Crohn’s Colitis Cure charity, fuelled by public donations and grants from pharmaceutical companies such as AbbVie, Pfizer, Takeda, Merck Sharp & Dohme (MSD), and Vifor Pharma.

Bill Petch, CEO of CCCure, emphasised “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.”

The collaborative effort with clinicians from the Australia and New Zealand Inflammatory Bowel Disease Consortium (ANZIBDC), including Dr Alissa Walsh, A/Professor Jake Begun, Dr Sally Bell, Professor Susie Connor, Dr Graham Radford-Smith and Professor Jane Andrews, among others, has propelled CCCare to the forefront of IBD clinical management.

Membership to CCCare unlocks access to the world’s largest reservoir of real-time IBD patient and clinical data, coupled with advanced analytics. This resource promises to elevate pharmaceutical R&D by providing a comprehensive understanding of unmet patient needs, ultimately leading to innovative therapies and a more patient-focused approach in the management of ulcerative colitis and Crohn’s disease.

With IBD expected to impact 2% of Australians, or approximately 300,000 individuals by 2030, there is a growing imperative for organisations to alleviate the economic and quality of life burdens through the development of innovative therapies.

CCCare currently boasts around 300 clinical users and an impressive 14,500 patient records, representing over 45,000 clinical encounters and around 30,000 patient years of data.

Mr Petch highlighted the platform’s global impact, stating, “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. We are already in advanced discussions with other commercial partners and hospitals around the world to help make this happen.”

Professor Jane Andrews, Head of IBD Service & Education, Department of Gastroenterology & Hepatology, Royal Adelaide Hospital and Chair of CCCure, stated “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.”

She added “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.”

Abstracts based on CCCare’s data and analytics have been accepted for presentation at the imminent European Crohn’s and Colitis Organisation (ECCO) congress and upcoming Digestive Disease Week (DDW) conference.

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