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Global cartilage patient registry’s strength at 1-year due to data, PROMs it contains
Expansion of the registry will include versions in more languages and its use as a tool to track ankle and hip cartilage data.
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The International Cartilage Repair Society global, web-based patient registry provides an international data pool for knee articular cartilage injury, history and treatment. One year after its launch, the registry continues to grow and evolve, with new additions to the registry now being discussed.
“We would like to have a single repository for data regarding the use of articular cartilage repair products and regenerative medicine products, so doctors can start to see in real-time how new treatments are affecting patients and what complications may exist,” Kenneth R. Zaslav, MD, president of the International Cartilage Repair Society (ICRS) and orthopedic surgeon at OrthoVirginia, told Orthopedics Today. “Rather than having to wait until we get double-blind, randomized studies on everything, [we would like to] be able to get data out earlier if there are obvious patterns of success or patterns of failure,” he said.
Collecting effective data
The registry, which is free to sign up for, had about 60 surgeons contributing data as of February 1, according to Leela C. Biant, FRCSED (Tr&Orth), MS, a member of the ICRS registry steering committee who is at the University of Manchester. In addition to entering data from current patients, physicians can enter data collected from previous patients if the previous patients provide their consent.
“We are already getting effective data because we are getting historical datasets in and we can pool that also and see what is going on,” Biant told Orthopedics Today.
Patients are encouraged to sign-up and enter patient-reported outcome measures and provide their full consent online, which would eliminate paper consent forms, she said.
Data collected will help orthopedists decide on treatment methods and keep the ICRS industry partners up-to-date on how their products are working worldwide. The registry data also can be used as proof of efficacy for submissions to regulatory boards, Biant said.
Future goals of registry
The registry is currently only for results of patients with knee-related cartilage injuries, but Biant noted it will soon include a pathway for ankle data and hip data. Also, by the end of 2018, the registry will be translated into seven languages, according to Biant.
“It is a registry that can collect anything short of an arthroplasty,” Biant said. “We can collect data on any technique in cartilage repair, but also even if we see a cartilage defect and do not address it or do something else instead. For example, any non-arthroplasty surgery can be included in this registry — osteotomy, injection — even doing no surgical technique to [treat] the defect we will get some data on what happens to that defect.”
Once more data are collected, the ICRS plans to release an annual report with numbers of patients in the registry, number of surgeons contributing data and results for each product and technique reported on.
“We also want to hopefully over time be able to put out some joint publications with the physicians who did the work reporting on these outcomes, so we can help surgeons make better choices for their patients in the future,” Zaslav said. – by Casey Tingle
- Reference:
- ICRS patient registry. Available at: https://cartilage.org/society/icrs-patient-registry/. Accessed Jan. 31, 2018.
- For more information:
- Leela C. Biant, FRCSED (Tr&Ortho), MS, can be reached at Oxford Rd., Manchester, M13 9PL, United Kingdom; email: tammy.ward@cartilage.org.
- Kenneth R. Zaslav, MD, can be reached at 7858 Shrader Rd., Richmond, VA 23294; email: tammy.ward@cartilage.org.
Disclosures: Biant and Zaslav report no relevant financial disclosures.