The International Cartilage Repair Society (ICRS) 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.”
Crucially, the Registry uses a simple, intuitive web-based interface 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, 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”, noted Dr Leela Biant, Chair of the ICRS Registry Steering Committee. 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.
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.
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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.