ZURICH, Switzerland, – The International Cartilage Repair Society has launched the first global, web-based patient registry, offering a unique international data pool for articular cartilage injury, history and treatment worldwide.
The Registry will dramatically expand the body of evidence available to clinicians, companies and health funders, providing pooled data that can be harnessed to better understand the most effective, safe, economical and clinically-relevant treatments, devices and practices in the treatment of acute cartilage damage and early osteoarthritis.“This is a fast-moving field with many new techniques,” said Dr Kenneth R. Zaslav, President of the ICRS. “The Registry will allow us to coordinate care and research between our members, and it will help companies see relevant problems sooner, and thereby get a feeling for usage of their technologies. In addition, our hope is that the Registry will serve as a pooled data source for comparing treatments, thereby facilitating more rapid enrolment in prospective, randomised studies – in turn shortening the overall time for improvements in patient care.”
The development of the Registry was first announced in 2013 by Dr Christoph Erggelet, Past ICRS President, and current Chair of the Registry Advisory Board. “It is a great achievement, and the hard work that has been invested in it will hopefully be reflected in its impact and growth over time,” he commented. Funded by the ICRS, in conjunction with indirect research and education support from industry partners, the Registry will be free of charge to patients, clinicians and healthcare institutions, thus promising total inclusivity. “We wanted to include data from developing countries, and those that don’t have funds for databases – and this way they can all contribute,” noted Dr Leela Biant, Chair of the ICRS Registry Steering Committee.
Crucially, the Registry uses a simple, intuitive web-based interface – accessible from computers, tablets and smartphones – to harness the data. First, a patient adds themselves electronically, and consents to inclusion in the Registry. The clinician then inputs the clinical data, after which the Registry contacts the patient to record their outcome scores and any complications. Along with new data, the Registry is also able to assimilate existing data sets, little or large, thereby immediately bolstering the potential for longer-term follow-up of patients who have previously been in trials, or those already part of smaller registries. “Within the first year of the Registry, we will be able to incorporate 10-year data for some patients and techniques,” continued Dr Biant. Furthermore, in conjunction with core, pooled data sets, the Registry software allows clinicians to bolt on additional scores or unique outcome measures relevant to them.
The Registry is designed and maintained by Amplitude Clinical (Droitwich, UK), a leading provider of web-based clinical outcomes systems, whose expertise in cutting-edge encryption ensures that governance and protection of data is maintained at leading global standards. Regular penetration testing is organised to ensure that security is upheld as storage expands to meet the needs of growing datasets. At launch, the Registry is available in English, with six additional languages planned for the Spring of 2017. Current data is restricted to the knee, with the ankle, hip and shoulder being incorporated in the near future. – Ends
ABOUT THE ICRS
The purpose of the ICRS is charitable: The society envisages the scientific research and the exchange of knowledge among physicians, scientists, patients and researchers of the industry in the field of Cartilage Repair. To serve its purpose, the society organises international congresses and events, publishes journals and provides a universal internet platform. The Society’s mission is: Advancing Science & Education of the Prevention & Treatment of Cartilage Disease Worldwide