Welcome to the ICRS Patient Registry
- Join the Patient Registry as a Clinician
- Join the Patient Registry as a Patient
- Read the Annual Reports
- Contact the Patient Registry Manager
- Meet our Registry Sponsors
The ICRS Patient Registry is the first international database for the clinical outcomes of cartilage repair and joint preservation treatments. We are passionate about inclusivity for our clinicians and patients, and currently offer the Registry in 13 languages. With expansion and wider use, additional languages may be added to the Registry. The Registry was established in 2016 at the ICRS Meeting in Sorrento. It is guided by a Steering Committee comprised of orthopaedic surgeons, veterinary surgeons, clinician scientists, and research scientists.
The Registry can monitor the progress of patients who have been diagnosed with pathologies of the articular cartilage, subchondral bone, and other soft tissues within the knee. It can thus allow a study of the natural history of such pathologies, whether they are treated surgically or conservatively. The response of patients to injury and to joint preservation or cartilage repair treatments can be variable. It is thus vital that patient progress is monitored, particularly as treatments at the forefront of medical advances may be expensive.
Clinicians may monitor their own patients’ progress through the Registry, as users have direct access to their own data. Clinicians can also export their data for analysis at any time. To monitor the progress of all patient data within the Registry, the ICRS pool together large numbers of anonymized data and analyse these. These analyses give us an accurate picture of which techniques are working best for which patients. As the Registry grows, the ICRS will prioritise undertaking research studies on the anonymised data held by the Registry. Collaboration Calls will also continue, whereby members of the ICRS and users of the Registry can apply for access to some of the anonymous data to perform their own research studies. All applications requesting access to anonymous Registry data are reviewed by the Steering Committee, and ethical approval for the proposed research is required before any anonymous data can be shared and analysed. Ultimately, the data held by this Registry will help future patients with similar injuries, and rapidly identify treatments that are showing great benefit, or those that may not be performing as well as hoped. The inclusion of the EQ-5D score in the Registry will also enable us to perform cost effectiveness and health economic analyses of the data in future.
Learn more about the ICRS Patient Registry by watching the interview with Mike McNicholas, Elizaveta Kon and Gwen Tawy.
Join the Registry as a clinician or hospital
Irrespective of the health care location in which you practice, recording this data is increasingly required for continued service provision. We therefore encourage you to start taking advantage of this free resource today.
From a clinician’s perspective, most countries are beginning to demand a reflective practice and audit of outcomes required to underpin ongoing delivery of care for complex cases. With a minimal time requirement, our database will facilitate this by using PROMS to add to the initial operative details you would supply via our secure internet based system. Reports are easily generated anytime for use in audits and annual appraisals. Comparisons of differing treatment modalities or rehabilitation regimens will ultimately give another valuable piece of the jigsaw puzzle for trying to decide which option would be best for the next patient seeing you in clinic with a painful knee that requires intervention for cartilage repair or joint preservation. The data of each contributor can at any time be used by the contributor for personal evaluation and/or publication purposes. Any output combining data of multiple contributors will be reviewed by the steering committee members to ensure clinically relevant use is made of this unique database. It will not be possible for other clinicians or health funders to view or directly publish your patient data. Your input will help move surgery forward on a global stage and your contribution will be invaluable in helping the ICRS in its objective of promoting unbiased knowledge based best practice shaping our orthopaedic treatments of the future in a way not previously possible. Annual reports from this Registry are available online, outlining the performance of those treatments currently offered with real world outcomes from this unbiased trustworthy source.
We invite clinicians (including allied health professionals) and hospitals all over the world to participate. Please fill in the form below to sign up for the Registry:
If you are a support staff, please fill in the form below to sign up for the Registry:
The use of the registry is completely free of charge for Surgeons, Hospitals & Patients. If you have already your login information, use this link: Physicians & Clinical Centers – Access the Cartilage Registry Here!
Clinician portal link – to enter information about your patient:
Key aspects:
• The registry is free of charge for patients and clinicians
• Report conservative and surgical treatments of cartilage repair and joint preservation
• Safe, web-based portal
• Rapid data entry with ability to pre-save forms for common interventions
• Support staff (Delegates) can assist clinicians with data entry
• Personal databases of previous patients can be merged into the ICRS Registry
• Your data can be used for personal (publication) purposes
• Mandatory for long-term assessment and progress in cartilage regeneration
To get started, please download our User Guide
Seeking Ethical Approval? Please review our Guidance for Ethical Approval 2023 documentation
Tutorials for clinicians
How can I add a new patient to the Registry?
This video tutorial will show you how to enrol a patient into the Registry as a surgeon or a delegate. We are encouraging all patients to enrol themselves into the Registry. However, if for whatever reason you would like to or need to enrol your patients yourself, this video will show you how. If you would like to learn how patients can enrol themselves, please watch our other tutorial titled ‘How do patients enrol themselves in the Registry?’.
How do I add pre-treatment information about a patient?
Once a patient has been enrolled to the Registry, you as the surgeon or delegate are required to complete a short form outlining your clinical assessment of the patient before their treatment begins. This tutorial will teach you how to enter this data into the Registry.
How do I enter conservative treatment information to the Registry?
This tutorial will teach you how to enter conservative treatments into the Registry. This form should be completed after a patient is prescribed or undergoes a conservative treatment. If you would like to learn how to enter information about an invasive procedure, please watch our other video titled ‘How do I enter information about an invasive procedure into the Registry?’.
How can I save a form as default?
This tutorial teaches you how to save a template form for a conservative or invasive procedure. This is extremely beneficial if you carry out the same procedures with multiple patients, as it enables you to generate your own templates with part completed answers to make your data entry simpler and faster.
How do I enter invasive procedure information into the Registry?
This tutorial will teach you how to enter details on an injection or surgical procedure into the Registry. This form should be completed after a patient undergoes the treatment. If you would like to learn how to enter information about a conservative procedure, please watch our other video titled ‘How do I enter information about a conservative treatment into the Registry?’.
Can I enroll patients without a cartilage defect in the Registry?
If you have a patient who has undergone a joint preserving surgical procedure, but has no damage to their articular cartilage, you can include them in the Registry using a new button. Under the mandatory question about the location of the cartilage defect or damage, you can now click ‘None – Reporting Other Joint Preservation Surgery’. You can then proceed to add the procedure performed. This video shows you how to add these patients using this new button.
How Do I report Arthrosamid treatments in the Registry?
We are pleased to announce that use of Contura’s injectable implant Arthrosamid can now be captured by the ICRS Patient Registry. Please watch this tutorial to learn how to report Arthrosamid injections in the Registry.
How Do I report Durolane and Gelsyn-3 Treatments in the ICRS Patient Registry?
We are pleased to announce that use of Bioventus’ Durolane and Gelsyn-3 treatments can now be captured by the ICRS Patient Registry. Please watch this tutorial to learn how to report Durolane and/or Gelsyn-3 injections in the Registry.
Join the Registry as a patient
I
f you suffer from joint pain, you are not alone. Each year, more than 50 million people visit their doctors because of joint pain — half of them with a damage of the articular cartilage. Many new and exciting treatments are emerging around the world with the hope of alleviating you of the painful condition that is affecting your quality of life. At the ICRS we have been central to the education of scientists, surgeons, physiotherapists and other healthcare professionals in sharing important information on new treatment options available to you. In time, this will help us work out which treatment options work best for each of our patients.
The primary objective of this patient registry is to measure the long-term success of treatments that repair damaged cartilage and preserve the knee joint, in an unbiased manner. The time you give in completing the straightforward questionnaires will allow healthcare professionals to help those patients in the future suffering with the same condition you have. This will give better knowledge of the likely success rate and potential for complications, so they can make a more informed choice. You, your healthcare professionals will be able to track your progress using this interface.
The registry is currently available for knee problems, but other joints will be added in due time. The platform is currently available in 12 languages.
General Data Protection Regulation (GDPR):
ICRS /Amplitude is processing your personal data under the lawful basis of legitimate interests under instruction from our registry, hospital and other clinical customers.
Confidentiality:
Your data will be treated with absolute confidentiality. However, if we identify a problem with a treatment as we analyse the data, we will contact the healthcare professionals using the Registry to ensure they keep a close eye on how their patients are getting on.
Key Aspects:
• You will be contributing to the evolution of medicine & surgery
• You will be able to track your own progress
• All data are treated 100% confidentially
Definition:
• A patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s).
Tutorial for patients
How do patients enrol themselves in the Registry?
This video tutorial shows you how patients can access their personal portal and enrol themselves. In this tutorial, you will also see the consent procedure for patients, as well as the questions that patients are asked to answer for the Registry.
Watch the 2024 Patient Registry Public Engagement Event
ICRS Patient Registry Annual Reports
We are pleased to announce the publication of the 4th Annual Report of the ICRS Patient Registry.
Over the last year, the ICRS Patient Registry Manager and Steering Committee have been working hard on improving the Registry portals for clinician and patient users, expanding the Registry’s available languages, and publishing findings to increase our Registry’s impact.
We are aware that a common bottleneck for clinicians is the requirement of ethical approval at their institution before the Registry can be used with their patients. We also recognise that seeking ethical approval can be an onerous task for the institutes in question. To expedite this process, the Committee have developed answers to common questions asked by ethics committees in the hope that this will encourage many more clinicians and institutes to utilise our free and multi-lingual resource. This new guidance has been published alongside this year’s Annual Report.
We are grateful for the contributions of our Registry Manager, Chair and Vice Chair of the Registry Steering Committee for the production of this Annual Report and guidance. We are also thankful to all clinician and patient users of the Registry for their contributions and to the current ICRS Patient Registry sponsors, Arthrex, Contura, for their continued support.
Annual Report 2023
Annual Report 2022
Annual Report 2020
Annual Report 2018
Contact us
For more information and feedback, please contact the ICRS Patient Registry Manager:
Dr. Theodorakys Marin Fermin
Sports Orthopaedic Surgeon
theodorakys.marin@cartilage.org
Thank you for your Feedback
The registry is currently available for knee problems but other joints will be added in due time. The patient platform is currently live in 13 languages. The ICRS Registry Steering Committee is happy to receive feedback and suggestions for future improvements or ideas for comparative audits. We are grateful for your giving us a little of your valuable time to help us work together with your patients to achieve these goals
Acknowledgements
This project would not have been possible without the substantial support of the Swiss “Mäxi Foundation” and the following Industry Partners:
Platinum Sponsors:
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Gold Sponsor
