THE NORE CHARTER
Charter of NORE – Network of Orthopaedic Registries of Europe
As of 02 June 2015
NORE as an all-inclusive network will foster international collaboration and co-ordination of learning and research in orthopaedics, with special focus on medical device surveillance, arthroplasty outcome, and other registries of orthopaedic conditions in order to support improvements in patient care.
NORE will provide advice and awareness to EFORT on international perspectives, experiences and practices in medical device surveillance. This may range from data capture (e.g. nomenclature) through data analysis and reporting techniques, to new methods for evaluating performance of medical devices.
2. RESPONSIBILITIES OF NORE
Create an all-inclusive national, regional and speciality society orthopaedic registry network.
Advice to emerging but also to established registries on registry related issues (e.g. data collection, methodological issues etc).
Initiate education and research projects within the network.
Promote awareness of NORE and its activities on an international level.
Comply with responsibilities of an EFORT standing committee.
Stimulate uniformity of registration and definition to enhance comparison of findings within Europe.
3. ORGANISATIONAL STRUCTURE
NORE stands for Network of Orthopaedic Registries of Europe. Initially, NORE will focus on Registries of Hip and Knee Arthroplasty – although initiatives and established registry formats for other joints and diseases (e.g. ankle, shoulder, spine, hip fractures) are not excluded. Even more, these established formats may help to create a blueprint to be used by others. The goal of the organisation is to produce uniformity in nomenclature and define those variables to be collected within a registry as a dataset.
The network is organised as a standing EFORT committee and reports to the EFORT Board.
As such, the EFORT regulations for standing committees apply except that it is anticipated that the organisational structure will be self-funding.
The network will be led by an Advisory Board under the leadership of a chairman appointed by EFORT for three years. The chairman can be re-elected once. The current chairman is Prof. Dr. Rob G.H.H. Nelissen, Chair & Professor Orthopaedics at Leiden University Medical Center (the Netherlands).
The Chairman will be a member of the EFORT Executive Committee with the following responsibilities:
- Participation in the two annual Executive Committee meetings (Jan/Feb and June, during the EFORT congress).
- Report to the EFORT Board & the EFORT Executive Committee on request, and in an annual written report.
- Set-up an annual budget proposal to be delivered to the EFORT Board for their meeting in September.
- Leading/chairing of the committee.
A possible structure of NORE could be that members of the Advisory Board are constituted by at least:
- a Chairman and a member of the EFORT board,
- and in addition, members from the NORE network representing the British Orthopaedic Association (BOA) or the National Joint Registry (NJR), the Nordic Arthroplasty Register Association (NARA), the German Hip Arthroplasty Register (EPRD), other European Registry and the International Society of Arthroplasty Registries (ISAR).
The majority of NORE activities will occur in working groups. In general, each working group shall have at least one NORE Advisory Board member, who is responsible for progress on the assigned working group topic. Challenges for the use of registry data ranging from research to education purposes are evident and can be addressed in working groups. These will report back to the annual meeting of NORE planned alongside the EFORT annual congress. A working group structure could be:
- PROM definitions.
- Outcome research.
- Implant library.
- International relationship.
- Working with authorities.
- Methodology and standardisations outcome research.
- Symposium/scientific organisation for EFORT congresses.
- Advice start-up registries.
Collaboration with other international organisations (e.g. ISAR, ICOR etc) on registry data will improve implant related patient outcome.
The main difference with other organisations is that NORE uses the EFORT forum as platform for its education and research endeavours.