Meet the Brand New International Cartilage Repair Society Registry
Around 25 million people suffer from cartilage damage each year. Patients could be suffering from sports-related injuries, or suffering from regular old wear and tear, and another 30 million have been diagnosed with osteoarthritis.
Whatever the case may be, those suffering from some type of cartilage damage are a huge patient population. With so many patients, there are lots of new procedures (like autologous chondrocyte implantation, for example) available for treatment, but how effective are they?
The International Cartilage Repair Society (ICRS) seeks to answer this very question with the introduction of the first-ever global patient cartilage registry. Its mission is “to create the best source of unbiased outcomes data for treatments of painful articular cartilage lesions in the world, which is paramount for improvement of existing and discovery of new cartilage repair strategies, ultimately beneficial for millions of patients around the world.”
Patient-Reported Outcome Data
At its core, the ICRS Registry collects Patient-Reported Outcome (PRO) data for patients with articular cartilage injuries, their history, and the treatments involved. Rheumatoid arthritis, gout, avascular necrosis and cancer within bones, osteoporosis, and other inflammatory or autoimmune diseases, are NOT measured by the ICRS Registry.
Because the registry is so new (it’s only been around since December 2016), it’s currently focused solely on knee patients. Ankle, hip, and shoulder data will be added in the near future, according to an ICRS press release. The registry also plans on incorporating existing data sets, including 10-year data on patients who have already been in clinical trials or are part of another registry.
The ICRS Registry is free to use for both patients and hospitals.
How the ICRS Registry Works
Submitting to the ICRS Registry is a little bit different from most registries. Instead of organizations submitting completed data to the registry, patients take the first step by logging into the registry themselves and giving consent to participate.
Next, the clinician selects the Patient-Reported Outcome Measure (PROM) appropriate for the patient to complete electronically. Once the patient takes the assessment, outcome scores are calculated, complications are noted, and the scores become visible to both patient and doctor. Click here to see the full ICRS user guide. And, because the registry is international, it is available in six different languages.
The goal of the registry is to align goals and coordinate care and research between IRCS members. ICRS President Kenneth R. Zaslav stated in a press release, “It will help companies see relevant problems sooner, and thereby get a feeling for the 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 enrollment in prospective, randomized studies – in turn shortening the overall time for improvements in patient care.”
The ICRS was founded in 1997 in Switzerland after the International Fribourg Symposium on Cartilage Repair organizers asked its faculty if they thought a Cartilage Repair Society would be helpful. According to the ICRS site, “the echo was overwhelmingly positive.” Nearly 18 years later, the society has 1,300 members from 66 countries and 1000 participants in the ICRS World Congress.
The ICRS Executive Board for 2016 to 2018 consists of President Kenneth Zaslav, 1st Vice President Alberto Gobbi, 2nd Vice President Tom Minas, Secretary-General Elizaveta Kon, Treasurer Daniels Grande, and Past President Norimasa Nakamura. Learn more about each Board Member by clicking here.
Source: ICRS Patient Registry
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