Table 2 Structural and operational characteristics of the registries included in the review

Country

Australia

United Kingdom

Canada

Denmark

Germany and Austria

Finland

Norway

Sweden

Switzerland

Year established

2018

2012

2015

2009

2011*

2016

2006

1998

2021

Source of funding

No stable funding; intermittent short-term funding agreements with a variety of supporters;

Australian government provided partial 2-year funding for 2022/2023*

The British Association of Spine Surgeons (BASS)

CSREF; CSS; industry and private donations

Public*

German Spine Society

Public*

Helse Nord RHF;

UNN HF

Public

No stable funding;

must apply to “Sveriges Kommuner och Regioner” (SKR) for funding each year*

Initial funding provided by the SIRIS Foundation. Today, hospitals pay a specific fee for every single case, part of which is used to run the registry*

Coverage (%)^a

NA

NA

50%

80%*

NA

83% public hospitals*

100% lumbar

91% cervical*

98%*

100%

Completeness (%)^b

 > 80%*

80%*

10%

NA

NA

80%*

81% lumbar

75% cervical*

86%*

NA

Data quality monitoring process or certification

Partial audit of 15% of private practice data before Covid pandemic*

Amplitude/steering committee*

The National Data Quality Coordinator

NA

Yes

Comparison to previous data uploads; validation of the data by clinical experts and descriptive statistics*

Yes

Steering group

Still in development; will be based on the surgery coded for financial reimbursement of the hospitals*

Website available? (language)

Yes (English)

Yes (English)

Yes (English)

Yes (Danish)

Yes (German)

No

Yes (Norwegian)

Yes (Swedish)

Yes (English, German, French and Italian)

Reports (language)

Yes (English)

Yes (English)

Yes (English)

Yes (Danish)

Yes (German)

No*

Yes (Norwegian)

Yes (Swedish, English)

No*

Are reports freely available?

Yes

Yes

Yes

Yes

Yes

No

Yes

Yes

Yes, although the first report is expected in 2024*

Frequency

Annual

Annual

Annual

Annual

Annual

Annual*

Annual

Annual

Annual*

Methods of data collection (text)

Primarily email; questionnaires through the KEOPs database web-based portal; paper-based by mail where necessary

Paper and electronic

Paper forms collected locally and uploaded electronically

Paper forms and direct online entry; paper forms collected locally and uploaded electronically

Questionnaire entered into the database of the reporting clinics; patient-reported data entered directly into the database. Stored by Public Health in one database for the whole country*

Direct online entry; Operation 2017 form

Direct online entry*

Self-administered and identical questionnaire or direct online entry

Web; paper*

Online only*

Administered questionnaires (PROMs, clinical, PREMs)

EQ-5D-3L;

EQ-VAS

EQ-5D; Fear-Avoidance; DASS-21; FABQ; PHQ2; PHQ9; ZSDS; PSFS; mJOA, JOA, PGIC, PSFS; SBI; SFI; MSPQ*

EQ-5D;; PHQ9; ODI; NDI

mJOA, LANSS, SRS22*

EQ-5D; SF-36; SRS22; HRQOL score

SF-36; EuroQoL-5D

EQ-5D-3L; PREM*

EQ-5D; EQ-VAS

EQ-5D; EQ-VAS; SRS-22r

PROMs are piloted and will presumably go live in Jan 2024

Timing of post-operative assessment

3 and 6 mo; 1 and 2 y

6 weeks; 6 mo; 1 and 2 y

[Baseline peri-operative]; 3 mo; 1,2 and 5 y*

[Baseline + pre-operative]; 1,2,5 and 10 y

[Baseline + peri-operative]; 3 mo; 1 and 2 y

3 mo; 1,2,5 and 10 y*

[Baseline + peri-operative]; 3 mo; 1 y and

then longer term where necessary*

1,2,5 and 10 y

To be implemented starting from 2024: 3 mo; 1 y*