Data Addendum 2024

Published

June 25, 2025

Visits

New patients

Patient self-observation
Figure 1: Main data collection within the SCQM in 2024

1 Introduction

This report provides an overview on the data and information collected in the past year (2024) for the different inflammatory rheumatic disease cohorts, see Figure 1, and special data collection initiatives like the unclassified arthritis cohort or the biobank project. Retroactive data entry is possible and all information within this report reflects the status within the SCQM as of the 2025-05-01.

Where not otherwise specified we report data or information on the SCQM patient populations at the end of 2024. The reporting considers any patient with at least one visit containing a minimum of physician based information. This report also excludes patients whose written informed consent has not been provided or not yet been verified.

There are three types of visits - inclusion, annual control and intermediate control visits. Each visit type includes physician and patient questionnaires. Furthermore the SCQM collects patient self-monitoring data via mySCQM independent of visits. An external link to summarized data collection schemes for each of the main cohorts is provided within Section 6.3.

As of the end of 2024 the main SCQM research cohorts encompass 20205 patients that have contributed their data for research. Table 1 provides further information about this cumulative population.

Table 1: Characterisation of the entire SCQM main cohorts at the conclusion of 2024.
Variable Level Overall RA axSpA PsA GCA/PMR
N of patients 20205 10753 5674 3275 503
Collection start 1997 2005 2006 2020
Year of inclusion (median [IQR]) 2012 [2007, 2017] 2009 [2003, 2015] 2014 [2009, 2018] 2015 [2010, 2019] 2022 [2021, 2023]
Last visit in (%) 2024 3436 (17.0) 1341 (12.5) 1115 (19.7) 807 (24.6) 173 (34.4)
2023 1269 (6.3) 540 (5.0) 397 (7.0) 240 (7.3) 92 (18.3)
Officially discontinued 7629 (37.8) 5033 (46.8) 1758 (31.0) 823 (25.1) 15 (3.0)
Inactive for at least 2 years 7871 (39.0) 3839 (35.7) 2404 (42.4) 1405 (42.9) 223 (44.3)
Year of last visit (median [IQR]) 2019 [2012, 2024] 2016 [2010, 2022] 2020 [2015, 2024] 2021 [2016, 2024] 2023 [2022, 2024]
Years of clinical FU (median [IQR]) 3.80 [1.04, 8.39] 4.30 [1.22, 9.11] 3.35 [0.96, 7.90] 3.71 [1.05, 7.92] 1.05 [0.00, 2.40]
Visits per patient (mean (SD)) 6.48 (6.08) 7.20 (6.77) 5.60 (5.02) 6.01 (5.24) 3.76 (3.34)
mySCQM entries per patient (mean (SD)) 5.76 (16.64) 4.10 (14.04) 7.90 (19.15) 8.07 (19.66) 1.94 (9.57)
Institution of inclusion visit (%) hospital 4400 (21.8) 2405 (22.4) 1319 (23.2) 582 (17.8) 94 (18.7)
private practice 11141 (55.1) 6067 (56.4) 3057 (53.9) 1946 (59.4) 71 (14.1)
university hospital 4664 (23.1) 2281 (21.2) 1298 (22.9) 747 (22.8) 338 (67.2)
Switched institution (%) All visits at inclusion site 17924 (88.7) 9490 (88.3) 4985 (87.9) 2951 (90.1) 498 (99.0)
Visits in multiple institutions 2281 (11.3) 1263 (11.7) 689 (12.1) 324 (9.9) 5 (1.0)

2 Core Data

Key Numbers

In 2024 the SCQM recorded 5827 visits from 4643 patients. Among these 527 patients were new inclusions. Furthermore, 18517 mySCQM entries were made by 2548 patients. Among these 230 were new mySCQM users. Visits were recorded by 246 doctors spread across 92 institutions in 16 different cantons.

See more in about Visits in Table 2, about Inclusions in Table 3 and about mySCQM in Table 4.

Table 2: Characterisation of the population that participated within the SCQM via visits throughout 2024.
Variable Level Overall RA axSpA PsA GCA/PMR
N of visits 5827 2252 1874 1408 293
Visit-related patient questionnaire (%) Included 3417 (58.6) 1276 (56.7) 1177 (62.8) 868 (61.6) 96 (32.8)
Not included 2410 (41.4) 976 (43.3) 697 (37.2) 540 (38.4) 197 (67.2)
Visit number within patient (%) Inclusion 527 (9.0) 168 (7.5) 162 (8.6) 146 (10.4) 51 (17.4)
2nd visit 529 (9.1) 141 (6.3) 168 (9.0) 140 (9.9) 80 (27.3)
3rd, 4th or 5th 1345 (23.1) 436 (19.4) 418 (22.3) 367 (26.1) 124 (42.3)
6th, 7th or 8th 924 (15.9) 349 (15.5) 311 (16.6) 244 (17.3) 20 (6.8)
9th visit or higher 2502 (42.9) 1158 (51.4) 815 (43.5) 511 (36.3) 18 (6.1)
Years since symptom onset (median [IQR]) 13.90 [6.99, 22.50] 14.36 [7.37, 22.05] 16.25 [9.37, 25.43] 12.92 [7.23, 20.97] 2.18 [0.93, 4.11]
Years since diagnosis (median [IQR]) 10.44 [4.64, 17.33] 12.62 [6.25, 19.65] 10.37 [4.88, 16.64] 9.76 [4.57, 16.16] 2.05 [0.80, 3.82]
Type of institution (%) hospital 993 (17.0) 350 (15.5) 370 (19.7) 177 (12.6) 96 (32.8)
private practice 3010 (51.7) 1138 (50.5) 1013 (54.1) 792 (56.2) 67 (22.9)
university hospital 1824 (31.3) 764 (33.9) 491 (26.2) 439 (31.2) 130 (44.4)
Per patient
N patients with visits 4643 1798 1511 1106 228
N of visits per patient (mean (SD)) 1.26 (0.66) 1.25 (0.67) 1.24 (0.65) 1.27 (0.68) 1.29 (0.57)
Year of inclusion (median [IQR]) 2018 [2013, 2022] 2016 [2011, 2021] 2018 [2013, 2022] 2019 [2014, 2022] 2023 [2021, 2023]
Table 3: Characterisation of the population of newly participating patients throughout 2024.
*dates of birth are only available in the format Year-Month. Ages were calculated while under the assumption everyone was born on the 15th of the month.
Variable Level Overall RA axSpA PsA GCA/PMR
N of patients 527 168 162 146 51
Age* at inclusion (median [IQR]) 53 [41, 65.50] 59 [48, 70] 42 [34, 49] 53 [43, 63] 76 [64.50, 79.50]
Years since symptom onset (median [IQR]) 4.81 [1.40, 12.65] 4.21 [1.35, 13.64] 7.38 [3.16, 14.84] 5.16 [2.12, 9.80] 0.50 [0.25, 1.31]
Years since diagnosis (median [IQR]) 2.33 [0.55, 7.97] 3.16 [0.74, 11.79] 2.81 [0.77, 7.86] 2.36 [0.58, 6.26] 0.11 [0.03, 1.34]
Type of institution (%) hospital 115 (21.8) 35 (20.8) 46 (28.4) 20 (13.7) 14 (27.5)
private practice 194 (36.8) 48 (28.6) 70 (43.2) 62 (42.5) 14 (27.5)
university hospital 218 (41.4) 85 (50.6) 46 (28.4) 64 (43.8) 23 (45.1)
Table 4: Characterisation of the population that contributed to SCQM via mySCQM self-observations throughout 2024.
*refers to patients that used the app in 2024, but not in 2023.
**refers to the unbroken string of years with at least one entry by that patient.
Variable Level Overall RA axSpA PsA GCA/PMR
N of entries 18517 6662 6990 4503 362
Entry number within patient (%) 1st entry 230 (1.2) 64 (1.0) 95 (1.4) 62 (1.4) 9 (2.5)
2nd to 10th 1914 (10.3) 552 (8.3) 852 (12.2) 433 (9.6) 77 (21.3)
11th to 40th 7393 (39.9) 2638 (39.6) 2812 (40.2) 1768 (39.3) 175 (48.3)
41th to 100th 8479 (45.8) 3270 (49.1) 2975 (42.6) 2149 (47.7) 85 (23.5)
101th entry or higher 501 (2.7) 138 (2.1) 256 (3.7) 91 (2.0) 16 (4.4)
Per patient
N patients with entries 2548 912 1017 584 35
N of entries per patient (mean (SD)) 7.27 (5.02) 7.30 (4.74) 6.87 (4.97) 7.71 (4.90) 10.34 (10.87)
User history (%) New user 230 (9.0) 64 (7.0) 95 (9.3) 62 (10.6) 9 (25.7)
Ongoing user 2193 (86.1) 803 (88.0) 867 (85.3) 497 (85.1) 26 (74.3)
Returning* user 125 (4.9) 45 (4.9) 55 (5.4) 25 (4.3) 0 (0.0)
Years of continued** usage (median [IQR]) 4.00 [2.75, 5.00] 4.00 [3.00, 4.00] 4.00 [2.00, 5.00] 4.00 [2.00, 4.00] 1.00 [0.50, 2.00]
Year of last visit (median [IQR]) 2024 [2023, 2024] 2024 [2022, 2024] 2024 [2023, 2024] 2024 [2023, 2025] 2024 [2024, 2024]

Contributing Institutions

The SCQM registry relies on the tireless work made by our many contributing institutions. Within Table 5, Table 6 and Table 7 we showcase those hospitals and practices that contributed the most towards the mission of the SCQM, both in 2024 and its entire existence, for visits, inclusions and new mySCQM users respectively. Note that these numbers include the special data collection for unclassified arthritis and not just the main research cohorts.

Table 5: Ranking of contributing institutions based on their visits.
*example: “Cabinet Max Muster is 11th this year and was 13th last year, thus they get a +2 because they gained two places”.
**determined based on absolute numbers.
2024, Cutoff: 100 visits
Rank Institution Type of institution Canton Change from 2023*
1 Universitätsspital Zürich UH ZH +1
2 Inselspital Bern UH BE -1
3 Centre hospitalier universitaire vaudois UH VD
4 HOCH Health Ostschweiz, Kantonsspital St.Gallen H SG +3
5 Rheumazentrum Laufen, Laufen PP BL +4
6 Rheuma Basel, Basel PP BS -1
7 Praxis Dr. med. Renate Mathieu, Solothurn PP SO +1
8 Hirslanden Klinik St. Anna im Bahnhof, Luzern PP LU -1
9 Hôpital La Chaux-de-Fonds H NE +2
10 Hôpitaux universitaires de Genève UH GE -4
11 rheumaliestal, Liestal PP BL +3
12 Ultraschall Zentrum Rheumatologie, Basel PP BS +1
13 Aerztegemeinschaft 115, Wettingen PP AG -3
14 Universitätsspital Basel UH BS -2
15 Rheumatologie im Zürcher Oberland, Uster PP ZH +1
16 rheuma-bern ag, Bern PP BE +2
17 Kantonsspital Aarau H AG +4
18 Rheumapraxis Sursee, Sursee PP LU -1
19 Kantonsspital Baden, Standort Brugg H AG +1
Top 20 across entire SCQM
Rank Institution Type of institution Canton Best year** Change from 2023*
1 Universitätsspital Zürich UH ZH 2024
2 Inselspital Bern UH BE 2018
3 Hôpitaux universitaires de Genève UH GE 2017
4 Centre hospitalier universitaire vaudois UH VD 2024
5 Rheuma Basel, Basel PP BS 2023
6 HOCH Health Ostschweiz, Kantonsspital St.Gallen H SG 2023
7 Bethesda-Spital, Basel H BS 2016
8 Kantonsspital Aarau H AG 2017
9 Hirslanden Klinik St. Anna im Bahnhof, Luzern PP LU 2019
10 Universitätsspital Basel UH BS 2021
11 OsteoRheumaBern, Bern PP BE 2017 +1
12 Praxis Dr. med. Alexander Martin, Liestal PP BL 2012 -1
13 Luzerner Kantonsspital, Luzern H LU 2012
14 Hôpital La Chaux-de-Fonds H NE 2017 +2
15 Kantonsspital Winterthur, Winterthur H ZH 2014 -1
16 Medizinisches Zentrum Brugg, Brugg PP AG 2016 -1
17 Berner Rheumazentrum, Bern PP BE 2018
18 rheumaliestal, Liestal PP BL 2021 +1
19 Praxis Dr. med. Renate Mathieu, Solothurn PP SO 2023 +2
20 Klinik Impuls, Wetzikon PP ZH 2021
Table 6: Ranking of contributing institutions based on their inclusions.
*example: “Cabinet Max Muster is 11th this year and was 13th last year, thus they get a +2 because they gained two places”.
**determined based on absolute numbers.
2024, Cutoff: 10 inclusions
Rank Institution Type of institution Canton Change from 2023*
1 Universitätsspital Zürich UH ZH
2 Universitätsspital Basel UH BS +1
3 Inselspital Bern UH BE -1
4 Hôpital La Chaux-de-Fonds H NE +2
5 Praxis Dr. med. Renate Mathieu, Solothurn PP SO
6 Ultraschall Zentrum Rheumatologie, Basel PP BS +4
7 Centre hospitalier universitaire vaudois UH VD +1
8 HOCH Health Ostschweiz, Kantonsspital St.Gallen H SG +10
9 Hôpitaux universitaires de Genève UH GE
10 Rheuma Basel, Basel PP BS -3
11 Rheumatologie im Zürcher Oberland, Uster PP ZH +9
12 Kantonsspital Aarau H AG +9
13 rheumaliestal, Liestal PP BL +21
14 Hirslanden Klinik St. Anna im Bahnhof, Luzern PP LU -3
15 Hôpital Riviera-Chablais, Vaud-Valais, Rennaz H VD +15
16 Spital Wil H SG +3
Top 20 across entire SCQM
Rank Institution Type of Institution Canton Best year** Change from 2023*
1 Universitätsspital Zürich UH ZH 2024
2 Inselspital Bern UH BE 2014
3 Centre hospitalier universitaire vaudois UH VD 2011
4 Hôpitaux universitaires de Genève UH GE 2017
5 HOCH Health Ostschweiz, Kantonsspital St.Gallen H SG 2012
6 Universitätsspital Basel UH BS 2016
7 Rheuma Basel, Basel PP BS 2009
8 Kantonsspital Aarau H AG 2016
9 Hirslanden Klinik St. Anna im Bahnhof, Luzern PP LU 2013
10 Universitätsklinik Balgrist, Zürich H ZH 2008
11 Bethesda-Spital, Basel H BS 2011
12 OsteoRheumaBern, Bern PP BE 2016
13 Hôpital La Chaux-de-Fonds H NE 2015 +1
14 Kantonsspital Winterthur, Winterthur H ZH 2013 -1
15 Luzerner Kantonsspital, Luzern H LU 2011
16 Berner Rheumazentrum, Bern PP BE 2018
17 Praxis Dr. med. Renate Mathieu, Solothurn PP SO 2023 +2
18 Bürgerspital Solothurn, Solothurn H SO 2010 -1
19 Klinik Impuls, Wetzikon PP ZH 2005 -1
20 rheumaliestal, Liestal PP BL 2017 +1
Table 7: Ranking of contributing institutions based on introducing both new and existing patients to mySCQM.
*example: “Cabinet Max Muster is 11th this year and was 13th last year, thus they get a +2 because they gained two places”.
**determined based on absolute numbers.
2024, Cutoff: 5 mySCQM activations
Rank Institution Type of institution Canton Change from 2023*
1 Universitätsspital Zürich UH ZH
2 Hôpital La Chaux-de-Fonds H NE +11
3 Ultraschall Zentrum Rheumatologie, Basel PP BS +5
4 Hôpitaux universitaires de Genève UH GE +3
5 Hirslanden Klinik St. Anna im Bahnhof, Luzern PP LU -1
6 Centre hospitalier universitaire vaudois UH VD -3
7 Rheuma Basel, Basel PP BS -5
8 Hôpital Riviera-Chablais, Vaud-Valais, Rennaz H VD +33
9 Kantonsspital Baden, Standort Brugg H AG +1
10 Inselspital Bern UH BE -5
11 Rheumatologie im Zürcher Oberland, Uster PP ZH +3
12 HOCH Health Ostschweiz, Kantonsspital St.Gallen H SG +8
13 Universitätsklinik Balgrist, Zürich H ZH +2
14 Praxis Tölle, Basel PP BS -2
15 rheumaliestal, Liestal PP BL +3
Top 20 across entire SCQM
Rank Institution Type of Institution Canton Best year** Change from 2023*
1 Universitätsspital Zürich UH ZH 2020
2 Inselspital Bern UH BE 2020
3 Hôpitaux universitaires de Genève UH GE 2020
4 Rheuma Basel, Basel PP BS 2020
5 Hirslanden Klinik St. Anna im Bahnhof, Luzern PP LU 2020
6 Centre hospitalier universitaire vaudois UH VD 2020
7 HOCH Health Ostschweiz, Kantonsspital St.Gallen H SG 2020
8 rheumaliestal, Liestal PP BL 2020
9 Rheumatologie im Zürcher Oberland, Uster PP ZH 2020
10 Hôpital La Chaux-de-Fonds H NE 2020 +2
11 OsteoRheumaBern, Bern PP BE 2020 -1
12 Klinik Impuls, Wetzikon PP ZH 2020 -1
13 Universitätsspital Basel UH BS 2020
14 Praxis Tölle, Basel PP BS 2020
15 Universitätsklinik Balgrist, Zürich H ZH 2020
16 Ultraschall Zentrum Rheumatologie, Basel PP BS 2020 +4
17 Kantonsspital Baden, Standort Brugg H AG 2020
18 Praxis Dr. med. Alexander Martin, Liestal PP BL 2019 -2
19 Studio Medico Badaracco Cattaneo, Lugano PP TI 2017 -1
20 Praxis Widrig-Bernhardt, St. Gallen PP SG 2020 -1

3 Maps of the SCQM

The SCQM is active across all of Switzerland thanks to its many participating institutions. Figure 2 provides a geographical look at this collection effort. Additionally, Figure 4 provides some descriptions of which kind of patient had a visit in 2024 split by canton and Figure 3 provides a look at the entire research cohort as of the snapshot of this report with each patient assigned to the location of their initial inclusion into the registry.

(a) Visits
(b) Inclusions
(c) Doctors that contributed visits
(d) Institutions that contributed visits
Figure 2: SCQM clinical data collection across Switzerland throughout 2024. Note that we do not track location during mySCQM use, thus preventing inclusion within these figures.
Figure 3: The entire cumulative SCQM cohort at the end of 2024. This figure matches the contents of Table 1.
(a) Patients split by mySCQM use
(b) Patients split by diagnosis
(c) Patients split by FU
(d) Patients split by whether they had a visit at an institution other than their original location of inclusion
Figure 4: Geographical characterization of patients with a visit in 2024. Patients who had visits in multiple cantons during 2024 are counted for the canton of their earliest visit throughout the year.

4 Cohort Demographics

The demographic distribution within our cohorts is depicted in Figure 5, structured in a way that allows comparisons between the subsets of patients tracked via visits and mySCQM respectively. Figure 6 provides a comparison of the self-assessed disease activity of patients across the population with visits in 2024. In Figure 7 we explore the overlap between the vsit and mySCQM subsets depicted in Figure 5. Finally, Figure 8 provides insight into the diagnostic delays of patients newly included this year.

(a) Patients who had a visit split by biological sex
(b) Patients who participiated in mySCQM split by biological sex
(c) Patients who had a visit split by generation