NORE Research & Publications

“NORE’s main focus of activities is on outcome research and methodological research in the context of arthroplasty registries.

Arthroplasty registries are powerful instruments to assess the performance of arthroplasty procedures, and a major source for both scientific and societal impact discussion.

NORE supports the development of arthroplasty registries and register documentation, and aims to enhance the comparability of reports by standardisation.”

ARTHROPLASTY REGISTRIES IN EUROPE

	Belgian National Arthroplasty Register https://www.ehealth.fgov.be/fr/esante/professionnels-de-la-sante/qermidorthopride
	Catalan Arthroplasty Register (RACat) http://aquas.gencat.cat/ca/projectes/mes_projectes/qualitat_atencio_sanitaria/racat/ Report 2005-2010 (PDF document, 73 pages, 1.7Mb)
	Czech Republic Arthroplasty Register http://www.uzis.cz/en/content/national-register-joint-replacement-nrkn
	Danish Hip Arthroplasty Register http://danskhoftealloplastikregister.dk/en/dhr/dhr-the-danish-hip-arthroplasty-register/
	Danish Knee Arthroplasty Register https://www.sundhed.dk/sundhedsfaglig/kvalitet/kliniske-kvalitetsdatabaser/planlagt-kirugi/knaealloplastikregister/
	Dutch Arthroplasty Register (LROI) www.lroi.nl
	Finnish National Arthroplasty Register www.thl.fi/far
	French Arthroplasty Register www.sofcot.fr
	German Arthroplasty Register Endoprothesenregister Deutschland EPRD www.eprd.de
	German Ankle Registry https://daf-register.memdoc.org/
	Hungarian Arthroplasty Register www.ortopedtarsasag.hu
	National Joint Registry (NJR) for England, Wales and Northern Ireland www.njrcentre.org.uk
	Norwegian Arthroplasty Register http://nrlweb.ihelse.net/eng/default.htm
	Portuguese National Arthroplasty Register www.rpa.spot.pt
	RIPO – Register for Orthopaedic Prosthetic Implantation (Emilia-Romagna, Italy) https://ripo.cineca.it
	Romanian Arthroplasty Register www.rne.ro
	The Scottish Arthroplasty Project www.arthro.scot.nhs.uk
	Slovakian National Arthroplasty Register http://sar.mfn.sk/.320.html
	The National Arthroplasty Register of Slovenia (RES) http://zdruzenje.ortopedov.si/
	Swedish Knee Arthroplasty Register www.myknee.se
	Swedish Hip Arthroplasty Register https://shpr.registercentrum.se/shar-in-english/the-swedish-hip-arthroplasty-register/p/ryouZwaoe
	Swiss Arthroplasty Register www.siris-implant.ch
	Turkish Arthroplasty Registry (regisTRy) Website available soon
	Valdoltra Arthroplasty Register (Slovenia) www.ob-valdoltra.si

ARTHROPLASTY REGISTRIES OUTSIDE EUROPE

	American Joint Replacement Registry (US AJRR) www.ajrr.net/publications-data/annual-reports
	Australian Orthopaedic Association National Joint Replacement Registry https://aoanjrr.sahmri.com/
	Canadian Joint Replacement Registry www.cihi.ca
	New Zealand Joint Registry https://nzoa.org.nz/nz-joint-registry
	Pakistan National Joint Registry (PNJR) www.arthroplasty.org.pk/
	Saudia Arabia Arthroplasty Registry www.soa.org.sa www.sfda.gov.sa

NORE publications focus on outcome research and methodological research in connection with Arthroplasty Registers.

RECOMMENDED REGISTER-RELATED PUBLICATIONS

• IDEAL-D: a rational framework for evaluating and regulating the use of medical devices
  BMJ 2016; 353 doi (Published 09 June 2016) by Art Sedrakyan, Bruce Campbell, Jose G Merino, Richard Kuntz, Allison Hirst, Peter McCulloch.
• No surgical innovation without evaluation: the IDEAL recommendations (PDF document, 8 pages,120kb)
• Evidence based introduction of orthopaedics implants: RSA, implant quality and patient safety (PDF document, 193 pages, 3.8Mb)
  PhD thesis Dr. Bart Pijls – Leiden University Medical Center The Netherlands (2014)
• Registro Português de Artroplastias – Portuguese Arthoplasty Register 2013 Annual Report (PDF document, 124 pages, 1.1 Mb)
• IDEAL framework for surgical innovation 3: randomised controlled trials in the assessment stage and evaluations in the long term study stage 
  BMJ 2013; 346  doi (Published 18 June 2013) by Jonathan A Cook, Peter McCulloch, Jane M Blazeby, David J Beard, Danica Marinac-Dabic
• Arthroplasty for Femoral Neck Fracture (PDF document, 99 pages, 2.4 Mb)
  PhD Thesis Dr. Olof Leonardsson – Lund University Sweden (2012)
• Patient-reported Outcome Measures and Health-economic Aspects of Total Hip Arthroplasty (PDF document, 92 pages, 3.3 Mb)
  PhD-Thesis Dr. Ola Rolfson – University of Gothenburg Sweden  (2010)
• The infected knee arthroplasty (PDF document, 39 pages, 2.4Mb)
  PhD Thesis Dr. Anna Stefansdóttir – Lund University Sweden (2010)
  
• Hip and Knee Replacement in Norway 1987-2000 – The Norwegian Arthroplasty Register (PDF document, 70 pages, 543 kb)
  By Prof. Ove Nord Furnes | Department of Orthopaedics and Traumatology  Haukeland University Hospital | Department  of Surgery and Section of Medical Informatics and Statistics of Bergen, Bergen, Norway (2002)
• Subjective outcomes after knee arthroplasty (PDF document, 66 pages, 451 kb)
  PhD Thesis Dr. Michael J. Dunbar – Lund University Sweden (2001)
  
• The Swedish Knee Arthroplasty Register – Validity and outcome (PDF document, 37 pages, 646 kb)
  PhD Thesis Prof. Otto Robertsson – Lund University Sweden (2000)
  
• The Swedish Knee Arthroplasty study with special reference to uni-compartmental prostheses (PDF document, 56 pages, 467 kb)
  PhD Thesis Dr. Stefan Lewold – Lund UNiversity Sweden (1997)
• Hip Arthroplasty in Norway 1987-1994 – The Norwegian Arthroplasty Register (PDF document, 114 pages, 5.02Mb)
  By Prof. Leif Ivar Havelin | Department of Orthopaedics and Traumatology  Haukeland University Hospital | Department  of Surgery and Section of Medical Informatics and Statistics of Bergen, Bergen, Norway (1995)

REGULATORS AND IMPLANTS REGISTRIES

Registry Data Collection and Research Guidelines, Policies and Procedures

Definition of specific guidelines, policies and procedures is work in progress by NORE. The process involves extensive discussion within the NORE network.

Results and documents will be published in this section and announced in the news section of the EFORT website.

International collaboration and definitions on methodology are essential for comparisons between national and regional reports.

NORE does not compete with National Arthroplasty Registries, but provides an additional level of evaluations. National registries remain free to add new contents to their national data collection, but harmonisation on variable definitions is a prerequisite.

NORE’s evaluations are based on the National Arthroplasty Registry datasets, as well as on a minimal set of variables, which ideally should be included as a minimum set in all regional and national datasets: the EFORT NORE minimal variables.

Two variables must be coded in a unique way – the patient and the implant:

• The patient must be uniquely identifiable to match primary and revision surgery for a given patient. A unique personal number (e.g. social security number etc.) is the most secure option, but other solutions are possible.
• The implant must be uniquely coded by the article and lot number of the implant (in the near future a UID will be available).

More information:

• EFORT NORE Minimal Registry Variables Requirements (PDF document, 1 page, 105kb)

EFORT NORE Minimal Datasets

Examples of possible Registry Variable forms (used by the Dutch Arthroplasty Registry, LROI, www.LROI.nl):

• EFORT NORE Variables Total Hip Arthroplasty (THA) Primary: Replacement of hip joint by a prosthetic implant (PDF document, 3 pages, 149kb) | Word version (836kb)
• EFORT NORE Variables Total Hip Arthroplasty (THA) Revision: Every change of components in the hip joint (PDF document, 3 pages, 139kb) | Word version (833kb)
• EFORT NORE Variables Total Knee Arthroplasty (TKA) Primary: Replacement of knee joint by a prosthetic implant (PDF document, 3 pages, 149kb) | Word version (937kb)
• EFORT NORE Variables Total Knee Arthroplasty (TKA) Revision: Every change of  components in the knee joint (PDF document, 3 pages, 140kb) | Word version (835kb)
• EFORT NORE Mininal Dataset Shoulder Primary (PDF document, 2 pages, 534kb)
• EFORT NORE Mininal Dataset Shoulder Revision (PDF document, 2 pages, 514kb

Codebook

• Codebook hip/ knee orthopaedic research databases – ARGON – Artrose Research Group Orthopedie Nederland (PDF document, 42 pages, 434kb)

European Commission and other governmental regulation agencies

• European Commission – DG Health & Food safety – Public Health
  http://ec.europa.eu/health/index_en.htm
• Horizon 2020 – The EU Framework Programme for Research and Innovation
  http://ec.europa.eu/programmes/horizon2020/
• UK Medicines & Healthcare products – Regulatory Agency
  www.gov.uk/government/
• U.S. Food and Drug Administration – Medical Devices
  www.fda.gov/MedicalDevices/
• Evaluation of new technology in health care – In need of guidance for relative evidence
  By the Royal Netherlands Academy of Arts and Sciences (2014)
  www.knaw.nl/ | PDF version (157 pages, 1.3Mb)