The International Cartilage Repair Society (ICRS), based in Zurich, Switzerland, has rolled out the first global, web-based patient Registry, offering a unique international data pool for articular cartilage injury, history and treatment worldwide. According to the ICRS, the Registry is available in English with six more languages coming in the spring of 2017. Current data is restricted to the knee with the ankle, hip and shoulder being incorporated in the near future.
“This is a fast-moving field with many new techniques”, said ICRS President Kenneth R. Zaslav, M.D in the December 7, 2016 news release. “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.”
As indicated in the news release, “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.
Dr. Biant told OTW, “Surgeons acknowledge the value of arthroplasty registries. Cartilage repair is at the forefront of technological advancement in orthopaedic surgery and regenerative medicine for joints. Surgeons undertaking cartilage repair see the value of pooling data. The restrictions of national registries meant that the ICRS Registry was the first to be designed as global and inclusive from the outset.”
“We have designed and delivered the first global patient registry. It is being translated into six further languages in the first wave, and more are planned. We envisage adding more joints to the data set in the coming years.”
“The ICRS Registry is free of charge for patents and clinicians to use. Data is encrypted and secure. Clinicians can access their own patients’ data anytime. Pooled data is anonymous. It is a web-based registry so no special software is required, it is paperless and patients consent electronically during self-registration.”
