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) |
Data Addendum 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.
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.
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] |
*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) |
*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.
*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.
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 |
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 |
*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.
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 |
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 |
*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.
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 |
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.
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.
5 Special Collection
Unclassified Arthritis
Up to and including 2024, the SCQM has recorded 4361 visits from 947 patients within the Unclassified Arthritis cohort. 63 new UA patients were included in 2024. Furthermore, 8630 mySCQM entries were made by 305 UA patients. The number of UA patients using mySCQM has grown by 35. Data from UA cohort is available for research under the same conditions as data from our main cohorts. Figure 9 depicts the build-up of such patients over the years.
Xrays
Up to and including 2024, 49899 sets of Xrays from 12662 patients were shared with the SCQM for use in research. 531 image sets were added in 2024, of which 94 were the first sets of their respective patients. Table 8 provides a description of the these images.
*active refers to patient with a visit in 2024.
Variable | Level | Overall | RA | axSpA | PsA | GCA/PMR | UA |
---|---|---|---|---|---|---|---|
N of Xray sets | 49899 | 33453 | 15658 | 463 | 12 | 313 | |
Requested | Hands and feet a.p. | Pelvis a.p., Lumbar spine a.p./lat, Cervical spine lat | Hands and feet a.p., Pelvis a.p., Lumbar spine a.p./lat, Cervical spine lat | none | none | ||
Score (%) | a | 49899 (100.0) | 33453 (100.0) | 15658 (100.0) | 463 (100.0) | 12 (100.0) | 313 (100.0) |
Taken X years after symptom onset (median [IQR]) | 10.40 [4.99, 18.36] | 9.21 [4.42, 16.66] | 13.27 [6.89, 22.00] | 10.22 [4.97, 17.82] | - | 7.16 [3.31, 13.29] | |
Taken X years after inclusion (median [IQR]) | 2.25 [0.00, 5.56] | 2.43 [0.02, 5.89] | 2.12 [0.00, 5.04] | 1.81 [0.00, 4.18] | - | 2.01 [0.02, 4.34] | |
Per patient | |||||||
N patients with sets | 12649 | 8842 | 3541 | 172 | - | 92 | |
Coverage of entire cohort | 60% | 82% | 62% | 5.3% | - | 9.7% | |
Sets per patient (mean (SD)) | 3.94 (3.94) | 3.78 (3.22) | 4.42 (5.34) | 2.69 (2.67) | - | 3.40 (3.70) | |
Active* patients | |||||||
N active* patient with sets | 1841 | 1081 | 722 | 30 | - | 7 | |
Coverage of active* cohort | 51% | 81% | 65% | 3.7% | - | 3.6% |
Biobank
The SCQM Biobank is located in the Sérothèque Centre of Geneva University Hospital, Departement de Médecine génétique et de Laboratoire. Since 2011 the primary objective is to collect one sample of serum and DNA from every patient in the SCQM. There are no exclusion criteria for the patients donating their biosamples to the biobank. All patients in Switzerland, independent of age, disease duration, severity and type of therapy can participate.
The SCQM has collected 4384 biosamples from 3868 patients. Contributions have been enabled by 116 different institutions, spread across 18 cantons. 70 new samples were added in 2024.
More details are available in Table 9.
*active refers to patient with a visit in 2024.
Variable | Level | Overall | RA | axSpA | PsA | GCA/PMR | UA |
---|---|---|---|---|---|---|---|
N of biosamples | 4384 | 2096 | 1300 | 698 | 117 | 173 | |
Includes (%) | DNA and serum | 4061 (92.6) | 1953 (93.2) | 1171 (90.1) | 664 (95.1) | 114 (97.4) | 159 (91.9) |
Just DNA | 15 (0.3) | 8 (0.4) | 5 (0.4) | 0 (0.0) | 1 (0.9) | 1 (0.6) | |
Just serum | 308 (7.0) | 135 (6.4) | 124 (9.5) | 34 (4.9) | 2 (1.7) | 13 (7.5) | |
Taken X years after symptom onset (median [IQR]) | 9.66 [4.49, 17.96] | 9.24 [4.40, 17.78] | 12.25 [6.31, 20.85] | 9.14 [4.54, 16.62] | 1.72 [0.54, 3.77] | 5.49 [2.89, 11.46] | |
Taken X years after inclusion (median [IQR]) | 1.49 [0.05, 5.29] | 1.98 [0.13, 6.92] | 1.51 [0.02, 4.97] | 1.01 [0.00, 3.96] | 0.49 [0.07, 1.42] | 0.45 [0.00, 2.28] | |
Per patient | |||||||
N patients with samples | 3867 | 1863 | 1095 | 643 | 114 | 152 | |
Coverage of entire cohort | 18% | 17% | 19% | 20% | 23% | 16% | |
Samples per patient (mean (SD)) | 1.13 (0.47) | 1.13 (0.45) | 1.19 (0.58) | 1.09 (0.32) | 1.03 (0.16) | 1.14 (0.54) | |
Active* patients | |||||||
N active* patient with samples | 1010 | 431 | 312 | 181 | 44 | 42 | |
Coverage of active* cohort | 28% | 32% | 28% | 22% | 25% | 22% |
RePreg
The collaboration between the SCQM and the Reproduction and Pregnancy in inflammatory rheumatic diseases cohort has led to records of 308 pregnancies from 242 patients. Among these, 265 pregnancies have both concluded and been tracked throughout. Tracking has then continued for 266 of the resulting children. 59 pregnancies have finished the post-natal questionnaires. Table 10 presents the current status of the ongoing collection efforts.
*patients who indicated plans to conceive within the coming months.
RA | axSpA | PsA | GCA/PMR | UA | Total | |
---|---|---|---|---|---|---|
Ongoing | ||||||
Preparing* for pregnancy | 62 | 61 | 17 | 0 | 11 | 151 |
Pregnant | 10 | 15 | 7 | 0 | 2 | 34 |
Other | ||||||
Willing to participate in future | 67 | 87 | 32 | 0 | 29 | 215 |
Cumulative number of past pregnancies | 90 | 125 | 53 | 0 | 40 | 308 |
Number of pregnancies with finished data collection | 21 | 20 | 6 | 0 | 12 | 59 |
6 Appendix
Glossary
Abbreviation | Full term | Details |
---|---|---|
FU | Follow-up | Time from a patients inclusion to their last/most recent visit within the SCQM |
PRO | Patient Reported Outcomes | Data provided directly by the patient rather than by a HCP |
- | mySCQM | The SCQM patient app for disease self-observation that allows patients to monitor the course of their disease activity, answer questions about medication compliance, and to directly participate in prospective studies with remote data collection |
HCP | healthcare professional | |
RA | rheumatoid arthritis | |
axSpA | axial spondyloarthritis | |
PsA | psoriatic arthritis | |
GCA | giant cell arteritis | |
PMR | polymyalgia rheumatica | |
UA | unclassified and other arthritis | |
N | Number | Usually used to shorten ‘Number of [something]’ |
H | hospital | |
UH | university hospital | |
PP | private practice | |
RePreg | reproduction and pregnancy in inflammatory rheumatic diseases cohort |
Details for Reproducibility
Git Hash: f8f4706d5b24761aba1e4f3c5867dc63f80bf223
Git Commit Date: Fri May 24 14:11:51 2024
Git Author: Andrea Goetschi
R Version: R version 4.4.2 (2024-10-31)
R Base Packages: stats / graphics / grDevices / utils / datasets / methods / base
R Other Packages: ggrepel, 0.9.6 / tidyr, 1.3.1 / lubridate, 1.9.3 / stringr, 1.5.1 / shiny, 1.9.1 / sf, 1.0-18 / dtplyr, 1.3.1 / scqm.dev, 6.0 / ggplot2, 3.5.1 / dplyr, 1.1.4
Generation Date: Fri May 30 16:03:34 2025-Europe/Zurich
Generation Platform: aarch64-apple-darwin20
Data Collection Schemes
Subject | Link |
---|---|
RA | Link |
axSpA | Link |
PsA | Link |
GCA | Link |
PMR | Link |
Additonal score overview | Link |
Matching Data for Figures
mon | hospital_type | diagnosis | n |
---|---|---|---|
Jan | hospital | RA | 36 |
Jan | hospital | axSpA | 34 |
Jan | hospital | PsA | 18 |
Jan | hospital | GCA/PMR | 9 |
Jan | private practice | RA | 110 |
Jan | private practice | axSpA | 83 |
Jan | private practice | PsA | 82 |
Jan | private practice | GCA/PMR | 8 |
Jan | university hospital | RA | 60 |
Jan | university hospital | axSpA | 53 |
Jan | university hospital | PsA | 44 |
Jan | university hospital | GCA/PMR | 8 |
Feb | hospital | RA | 29 |
Feb | hospital | axSpA | 34 |
Feb | hospital | PsA | 16 |
Feb | hospital | GCA/PMR | 6 |
Feb | private practice | RA | 86 |
Feb | private practice | axSpA | 83 |
Feb | private practice | PsA | 63 |
Feb | private practice | GCA/PMR | 6 |
Feb | university hospital | RA | 70 |
Feb | university hospital | axSpA | 49 |
Feb | university hospital | PsA | 31 |
Feb | university hospital | GCA/PMR | 13 |
Mar | hospital | RA | 31 |
Mar | hospital | axSpA | 32 |
Mar | hospital | PsA | 26 |
Mar | hospital | GCA/PMR | 6 |
Mar | private practice | RA | 124 |
Mar | private practice | axSpA | 100 |
Mar | private practice | PsA | 62 |
Mar | private practice | GCA/PMR | 10 |
Mar | university hospital | RA | 73 |
Mar | university hospital | axSpA | 40 |
Mar | university hospital | PsA | 33 |
Mar | university hospital | GCA/PMR | 8 |
Apr | hospital | RA | 47 |
Apr | hospital | axSpA | 36 |
Apr | hospital | PsA | 20 |
Apr | hospital | GCA/PMR | 7 |
Apr | private practice | RA | 91 |
Apr | private practice | axSpA | 81 |
Apr | private practice | PsA | 76 |
Apr | private practice | GCA/PMR | 3 |
Apr | university hospital | RA | 59 |
Apr | university hospital | axSpA | 43 |
Apr | university hospital | PsA | 53 |
Apr | university hospital | GCA/PMR | 14 |
May | hospital | RA | 39 |
May | hospital | axSpA | 30 |
May | hospital | PsA | 22 |
May | hospital | GCA/PMR | 8 |
May | private practice | RA | 114 |
May | private practice | axSpA | 102 |
May | private practice | PsA | 62 |
May | private practice | GCA/PMR | 3 |
May | university hospital | RA | 76 |
May | university hospital | axSpA | 36 |
May | university hospital | PsA | 35 |
May | university hospital | GCA/PMR | 13 |
Jun | hospital | RA | 43 |
Jun | hospital | axSpA | 30 |
Jun | hospital | PsA | 9 |
Jun | hospital | GCA/PMR | 14 |
Jun | private practice | RA | 113 |
Jun | private practice | axSpA | 81 |
Jun | private practice | PsA | 92 |
Jun | private practice | GCA/PMR | 11 |
Jun | university hospital | RA | 77 |
Jun | university hospital | axSpA | 34 |
Jun | university hospital | PsA | 30 |
Jun | university hospital | GCA/PMR | 11 |
Jul | hospital | RA | 29 |
Jul | hospital | axSpA | 31 |
Jul | hospital | PsA | 16 |
Jul | hospital | GCA/PMR | 7 |
Jul | private practice | RA | 73 |
Jul | private practice | axSpA | 61 |
Jul | private practice | PsA | 58 |
Jul | private practice | GCA/PMR | 3 |
Jul | university hospital | RA | 47 |
Jul | university hospital | axSpA | 29 |
Jul | university hospital | PsA | 35 |
Jul | university hospital | GCA/PMR | 8 |
Aug | hospital | RA | 16 |
Aug | hospital | axSpA | 19 |
Aug | hospital | PsA | 9 |
Aug | hospital | GCA/PMR | 10 |
Aug | private practice | RA | 77 |
Aug | private practice | axSpA | 82 |
Aug | private practice | PsA | 68 |
Aug | private practice | GCA/PMR | 5 |
Aug | university hospital | RA | 53 |
Aug | university hospital | axSpA | 34 |
Aug | university hospital | PsA | 28 |
Aug | university hospital | GCA/PMR | 12 |
Sep | hospital | RA | 22 |
Sep | hospital | axSpA | 47 |
Sep | hospital | PsA | 11 |
Sep | hospital | GCA/PMR | 5 |
Sep | private practice | RA | 101 |
Sep | private practice | axSpA | 87 |
Sep | private practice | PsA | 62 |
Sep | private practice | GCA/PMR | 4 |
Sep | university hospital | RA | 51 |
Sep | university hospital | axSpA | 39 |
Sep | university hospital | PsA | 27 |
Sep | university hospital | GCA/PMR | 4 |
Oct | hospital | RA | 25 |
Oct | hospital | axSpA | 22 |
Oct | hospital | PsA | 12 |
Oct | hospital | GCA/PMR | 5 |
Oct | private practice | RA | 75 |
Oct | private practice | axSpA | 74 |
Oct | private practice | PsA | 61 |
Oct | private practice | GCA/PMR | 3 |
Oct | university hospital | RA | 60 |
Oct | university hospital | axSpA | 54 |
Oct | university hospital | PsA | 40 |
Oct | university hospital | GCA/PMR | 10 |
Nov | hospital | RA | 16 |
Nov | hospital | axSpA | 27 |
Nov | hospital | PsA | 12 |
Nov | hospital | GCA/PMR | 13 |
Nov | private practice | RA | 104 |
Nov | private practice | axSpA | 106 |
Nov | private practice | PsA | 56 |
Nov | private practice | GCA/PMR | 7 |
Nov | university hospital | RA | 71 |
Nov | university hospital | axSpA | 44 |
Nov | university hospital | PsA | 43 |
Nov | university hospital | GCA/PMR | 17 |
Dec | hospital | RA | 17 |
Dec | hospital | axSpA | 28 |
Dec | hospital | PsA | 6 |
Dec | hospital | GCA/PMR | 6 |
Dec | private practice | RA | 70 |
Dec | private practice | axSpA | 73 |
Dec | private practice | PsA | 50 |
Dec | private practice | GCA/PMR | 4 |
Dec | university hospital | RA | 67 |
Dec | university hospital | axSpA | 36 |
Dec | university hospital | PsA | 40 |
Dec | university hospital | GCA/PMR | 12 |
mon | hospital_type | diagnosis | n |
---|---|---|---|
Jan | hospital | RA | 3 |
Jan | hospital | axSpA | 8 |
Jan | hospital | PsA | 3 |
Jan | hospital | GCA/PMR | 3 |
Jan | private practice | RA | 5 |
Jan | private practice | axSpA | 6 |
Jan | private practice | PsA | 3 |
Jan | private practice | GCA/PMR | 1 |
Jan | university hospital | RA | 9 |
Jan | university hospital | axSpA | 2 |
Jan | university hospital | PsA | 3 |
Feb | hospital | RA | 4 |
Feb | hospital | axSpA | 3 |
Feb | hospital | PsA | 3 |
Feb | hospital | GCA/PMR | 1 |
Feb | private practice | RA | 2 |
Feb | private practice | axSpA | 5 |
Feb | private practice | PsA | 4 |
Feb | private practice | GCA/PMR | 1 |
Feb | university hospital | RA | 9 |
Feb | university hospital | axSpA | 4 |
Feb | university hospital | PsA | 4 |
Feb | university hospital | GCA/PMR | 2 |
Mar | hospital | RA | 3 |
Mar | hospital | axSpA | 1 |
Mar | hospital | PsA | 3 |
Mar | hospital | GCA/PMR | 2 |
Mar | private practice | RA | 4 |
Mar | private practice | axSpA | 5 |
Mar | private practice | PsA | 6 |
Mar | private practice | GCA/PMR | 3 |
Mar | university hospital | RA | 7 |
Mar | university hospital | axSpA | 8 |
Mar | university hospital | PsA | 6 |
Mar | university hospital | GCA/PMR | 1 |
Apr | hospital | RA | 2 |
Apr | hospital | axSpA | 5 |
Apr | hospital | PsA | 1 |
Apr | hospital | GCA/PMR | 2 |
Apr | private practice | RA | 3 |
Apr | private practice | axSpA | 4 |
Apr | private practice | PsA | 8 |
Apr | university hospital | RA | 6 |
Apr | university hospital | axSpA | 4 |
Apr | university hospital | PsA | 9 |
Apr | university hospital | GCA/PMR | 2 |
May | hospital | RA | 3 |
May | hospital | axSpA | 3 |
May | hospital | PsA | 1 |
May | private practice | RA | 6 |
May | private practice | axSpA | 3 |
May | private practice | PsA | 5 |
May | university hospital | RA | 4 |
May | university hospital | axSpA | 3 |
May | university hospital | PsA | 6 |
May | university hospital | GCA/PMR | 4 |
Jun | hospital | RA | 3 |
Jun | hospital | axSpA | 5 |
Jun | hospital | GCA/PMR | 4 |
Jun | private practice | RA | 4 |
Jun | private practice | axSpA | 5 |
Jun | private practice | PsA | 6 |
Jun | private practice | GCA/PMR | 1 |
Jun | university hospital | RA | 9 |
Jun | university hospital | axSpA | 4 |
Jun | university hospital | PsA | 4 |
Jun | university hospital | GCA/PMR | 3 |
Jul | hospital | RA | 3 |
Jul | hospital | axSpA | 4 |
Jul | hospital | PsA | 1 |
Jul | hospital | GCA/PMR | 1 |
Jul | private practice | RA | 4 |
Jul | private practice | axSpA | 2 |
Jul | private practice | PsA | 6 |
Jul | private practice | GCA/PMR | 2 |
Jul | university hospital | RA | 4 |
Jul | university hospital | axSpA | 5 |
Jul | university hospital | PsA | 5 |
Aug | hospital | RA | 3 |
Aug | hospital | axSpA | 1 |
Aug | hospital | GCA/PMR | 1 |
Aug | private practice | RA | 3 |
Aug | private practice | axSpA | 7 |
Aug | private practice | PsA | 7 |
Aug | private practice | GCA/PMR | 3 |
Aug | university hospital | RA | 7 |
Aug | university hospital | axSpA | 1 |
Aug | university hospital | PsA | 9 |
Aug | university hospital | GCA/PMR | 3 |
Sep | hospital | RA | 2 |
Sep | hospital | axSpA | 4 |
Sep | hospital | PsA | 2 |
Sep | private practice | RA | 3 |
Sep | private practice | axSpA | 6 |
Sep | private practice | PsA | 5 |
Sep | university hospital | RA | 4 |
Sep | university hospital | axSpA | 4 |
Sep | university hospital | PsA | 2 |
Sep | university hospital | GCA/PMR | 1 |
Oct | hospital | RA | 5 |
Oct | hospital | axSpA | 3 |
Oct | hospital | PsA | 2 |
Oct | private practice | RA | 1 |
Oct | private practice | axSpA | 11 |
Oct | private practice | PsA | 8 |
Oct | private practice | GCA/PMR | 1 |
Oct | university hospital | RA | 3 |
Oct | university hospital | axSpA | 5 |
Oct | university hospital | PsA | 3 |
Oct | university hospital | GCA/PMR | 2 |
Nov | hospital | RA | 3 |
Nov | hospital | axSpA | 6 |
Nov | hospital | PsA | 3 |
Nov | private practice | RA | 10 |
Nov | private practice | axSpA | 9 |
Nov | private practice | PsA | 2 |
Nov | private practice | GCA/PMR | 1 |
Nov | university hospital | RA | 14 |
Nov | university hospital | axSpA | 3 |
Nov | university hospital | PsA | 4 |
Nov | university hospital | GCA/PMR | 2 |
Dec | hospital | RA | 1 |
Dec | hospital | axSpA | 3 |
Dec | hospital | PsA | 1 |
Dec | private practice | RA | 3 |
Dec | private practice | axSpA | 7 |
Dec | private practice | PsA | 2 |
Dec | private practice | GCA/PMR | 1 |
Dec | university hospital | RA | 9 |
Dec | university hospital | axSpA | 3 |
Dec | university hospital | PsA | 9 |
Dec | university hospital | GCA/PMR | 3 |
mon | diagnosis | n |
---|---|---|
Jan | RA | 578 |
Jan | axSpA | 612 |
Jan | PsA | 378 |
Jan | GCA/PMR | 32 |
Feb | RA | 550 |
Feb | axSpA | 558 |
Feb | PsA | 344 |
Feb | GCA/PMR | 29 |
Mar | RA | 553 |
Mar | axSpA | 558 |
Mar | PsA | 382 |
Mar | GCA/PMR | 30 |
Apr | RA | 584 |
Apr | axSpA | 592 |
Apr | PsA | 379 |
Apr | GCA/PMR | 28 |
May | RA | 583 |
May | axSpA | 607 |
May | PsA | 375 |
May | GCA/PMR | 30 |
Jun | RA | 558 |
Jun | axSpA | 584 |
Jun | PsA | 371 |
Jun | GCA/PMR | 27 |
Jul | RA | 546 |
Jul | axSpA | 584 |
Jul | PsA | 399 |
Jul | GCA/PMR | 28 |
Aug | RA | 568 |
Aug | axSpA | 569 |
Aug | PsA | 372 |
Aug | GCA/PMR | 31 |
Sep | RA | 526 |
Sep | axSpA | 563 |
Sep | PsA | 365 |
Sep | GCA/PMR | 29 |
Oct | RA | 561 |
Oct | axSpA | 598 |
Oct | PsA | 389 |
Oct | GCA/PMR | 31 |
Nov | RA | 542 |
Nov | axSpA | 559 |
Nov | PsA | 363 |
Nov | GCA/PMR | 31 |
Dec | RA | 513 |
Dec | axSpA | 606 |
Dec | PsA | 386 |
Dec | GCA/PMR | 36 |
Data for Figure 1
canton | private practice | hospital | university hospital |
---|---|---|---|
TI | 161 | 0 | 0 |
GR | 3 | 0 | 0 |
TG | 3 | 1 | 0 |
ZH | 365 | 167 | 640 |
AG | 231 | 212 | 0 |
BS | 612 | 4 | 154 |
BL | 462 | 34 | 0 |
SG | 98 | 284 | 0 |
SO | 265 | 0 | 0 |
GE | 0 | 0 | 199 |
VD | 92 | 26 | 384 |
NE | 0 | 205 | 0 |
BE | 363 | 6 | 447 |
LU | 351 | 46 | 0 |
SZ | 4 | 7 | 0 |
FR | 0 | 1 | 0 |
canton | private practice | hospital | university hospital |
---|---|---|---|
TI | 5 | 0 | 0 |
GR | 1 | 0 | 0 |
TG | 3 | 1 | 0 |
ZH | 43 | 11 | 116 |
AG | 2 | 27 | 0 |
BS | 45 | 0 | 33 |
BL | 27 | 4 | 0 |
SG | 3 | 31 | 0 |
SO | 23 | 0 | 0 |
GE | 0 | 0 | 20 |
VD | 8 | 12 | 21 |
NE | 0 | 28 | 0 |
BE | 11 | 1 | 28 |
LU | 22 | 0 | 0 |
SZ | 1 | 0 | 0 |
canton | private practice | hospital | university hospital |
---|---|---|---|
TI | 4 | 0 | 0 |
GR | 1 | 0 | 0 |
TG | 1 | 1 | 0 |
ZH | 21 | 18 | 34 |
AG | 3 | 15 | 0 |
BS | 11 | 1 | 20 |
BL | 8 | 4 | 0 |
SG | 4 | 15 | 0 |
SO | 3 | 0 | 0 |
GE | 0 | 0 | 9 |
VD | 3 | 1 | 3 |
NE | 0 | 8 | 0 |
BE | 14 | 3 | 27 |
LU | 6 | 6 | 0 |
SZ | 1 | 0 | 0 |
FR | 0 | 1 | 0 |
canton | private practice | hospital | university hospital |
---|---|---|---|
TI | 4 | 0 | 0 |
GR | 1 | 0 | 0 |
TG | 1 | 1 | 0 |
ZH | 20 | 4 | 1 |
AG | 3 | 4 | 0 |
BS | 8 | 1 | 1 |
BL | 5 | 1 | 0 |
SG | 4 | 2 | 0 |
SO | 3 | 0 | 0 |
GE | 0 | 0 | 1 |
VD | 3 | 1 | 1 |
NE | 0 | 1 | 0 |
BE | 9 | 2 | 1 |
LU | 5 | 1 | 0 |
SZ | 1 | 1 | 0 |
FR | 0 | 1 | 0 |
Data for Figure 2
canton | RA | axSpA | PsA | GCA/PMR |
---|---|---|---|---|
VS | 257 | 98 | 48 | 3 |
TI | 315 | 118 | 154 | 6 |
GR | 100 | 38 | 23 | 0 |
SH | 95 | 29 | 20 | 0 |
TG | 280 | 42 | 20 | 1 |
ZH | 2105 | 1435 | 613 | 54 |
AG | 849 | 376 | 240 | 15 |
BS | 737 | 544 | 327 | 226 |
BL | 451 | 271 | 154 | 5 |
SG | 694 | 316 | 185 | 50 |
SO | 473 | 225 | 325 | 1 |
JU | 71 | 10 | 9 | 0 |
GE | 660 | 243 | 140 | 38 |
VD | 983 | 540 | 192 | 11 |
NE | 188 | 157 | 62 | 6 |
BE | 1499 | 738 | 495 | 86 |
LU | 564 | 319 | 179 | 1 |
ZG | 68 | 30 | 16 | 0 |
UR | 14 | 2 | 3 | 0 |
SZ | 13 | 12 | 7 | 0 |
GL | 8 | 3 | 0 | 0 |
NW | 20 | 3 | 2 | 0 |
FR | 205 | 70 | 32 | 0 |
OW | 60 | 48 | 23 | 0 |
AR | 42 | 5 | 5 | 0 |
canton | yes | no |
---|---|---|
TI | 33 | 126 |
GR | 1 | 2 |
TG | 0 | 4 |
ZH | 422 | 446 |
AG | 95 | 210 |
BS | 219 | 425 |
BL | 110 | 201 |
SG | 77 | 276 |
SO | 20 | 201 |
GE | 72 | 88 |
VD | 92 | 221 |
NE | 44 | 104 |
BE | 184 | 597 |
LU | 138 | 224 |
SZ | 2 | 8 |
FR | 1 | 0 |
canton | RA | axSpA | PsA | GCA/PMR |
---|---|---|---|---|
TI | 69 | 34 | 51 | 5 |
GR | 0 | 1 | 2 | 0 |
TG | 2 | 2 | 0 | 0 |
ZH | 280 | 354 | 204 | 30 |
AG | 142 | 89 | 62 | 12 |
BS | 209 | 223 | 140 | 72 |
BL | 139 | 106 | 62 | 4 |
SG | 156 | 94 | 73 | 30 |
SO | 52 | 28 | 140 | 1 |
GE | 79 | 46 | 30 | 5 |
VD | 138 | 113 | 55 | 7 |
NE | 44 | 70 | 28 | 6 |
BE | 321 | 227 | 178 | 55 |
LU | 161 | 119 | 81 | 1 |
SZ | 5 | 5 | 0 | 0 |
FR | 1 | 0 | 0 | 0 |
canton | new | short | mid | long |
---|---|---|---|---|
TI | 5 | 42 | 30 | 82 |
GR | 1 | 0 | 2 | 0 |
TG | 4 | 0 | 0 | 0 |
ZH | 170 | 268 | 166 | 264 |
AG | 29 | 78 | 96 | 102 |
BS | 78 | 266 | 145 | 155 |
BL | 31 | 117 | 87 | 76 |
SG | 34 | 131 | 69 | 119 |
SO | 23 | 105 | 44 | 49 |
GE | 20 | 45 | 42 | 53 |
VD | 41 | 152 | 59 | 61 |
NE | 28 | 71 | 38 | 11 |
BE | 40 | 277 | 214 | 250 |
LU | 22 | 142 | 92 | 106 |
SZ | 1 | 2 | 1 | 6 |
FR | 0 | 1 | 0 | 0 |
canton | switch | stationary |
---|---|---|
TI | 6 | 153 |
GR | 0 | 3 |
TG | 0 | 4 |
ZH | 144 | 724 |
AG | 95 | 210 |
BS | 96 | 548 |
BL | 67 | 244 |
SG | 20 | 333 |
SO | 10 | 211 |
GE | 9 | 151 |
VD | 58 | 255 |
NE | 6 | 142 |
BE | 85 | 696 |
LU | 72 | 290 |
SZ | 5 | 5 |
FR | 0 | 1 |
Data for Figure 4
gender | diagnosis | n |
---|---|---|
Female | RA | 975 |
Female | axSpA | 514 |
Female | PsA | 410 |
Female | GCA/PMR | 109 |
Male | RA | 366 |
Male | axSpA | 601 |
Male | PsA | 397 |
Male | GCA/PMR | 64 |
gender | diagnosis | n |
---|---|---|
female | RA | 682 |
female | axSpA | 525 |
female | PsA | 294 |
female | GCA/PMR | 24 |
male | RA | 230 |
male | axSpA | 489 |
male | PsA | 290 |
male | GCA/PMR | 11 |
generation | diagnosis | n |
---|---|---|
1996 or younger | RA | 15 |
1996 or younger | axSpA | 58 |
1996 or younger | PsA | 10 |
1996 or younger | GCA/PMR | 1 |
1980-1995(Millenial) | RA | 149 |
1980-1995(Millenial) | axSpA | 363 |
1980-1995(Millenial) | PsA | 137 |
1980-1995(Millenial) | GCA/PMR | 1 |
1964-1979(X) | RA | 370 |
1964-1979(X) | axSpA | 463 |
1964-1979(X) | PsA | 339 |
1964-1979(X) | GCA/PMR | 10 |
1945-1963(Boomer) | RA | 685 |
1945-1963(Boomer) | axSpA | 225 |
1945-1963(Boomer) | PsA | 302 |
1945-1963(Boomer) | GCA/PMR | 124 |
1944 or older | RA | 122 |
1944 or older | axSpA | 6 |
1944 or older | PsA | 19 |
1944 or older | GCA/PMR | 39 |
generation | diagnosis | n |
---|---|---|
1996 or younger | RA | 9 |
1996 or younger | axSpA | 32 |
1996 or younger | PsA | 7 |
1996 or younger | GCA/PMR | 1 |
1980-1995(Millenial) | RA | 133 |
1980-1995(Millenial) | axSpA | 334 |
1980-1995(Millenial) | PsA | 108 |
1980-1995(Millenial) | GCA/PMR | 1 |
1964-1979(X) | RA | 322 |
1964-1979(X) | axSpA | 432 |
1964-1979(X) | PsA | 261 |
1964-1979(X) | GCA/PMR | 6 |
1945-1963(Boomer) | RA | 422 |
1945-1963(Boomer) | axSpA | 213 |
1945-1963(Boomer) | PsA | 197 |
1945-1963(Boomer) | GCA/PMR | 26 |
1944 or older | RA | 26 |
1944 or older | axSpA | 3 |
1944 or older | PsA | 11 |
1944 or older | GCA/PMR | 3 |
education | diagnosis | n |
---|---|---|
Skipped question | RA | 125 |
Skipped question | axSpA | 173 |
Skipped question | PsA | 107 |
Mandatory | RA | 113 |
Mandatory | axSpA | 67 |
Mandatory | PsA | 56 |
Vocational | RA | 441 |
Vocational | axSpA | 328 |
Vocational | PsA | 270 |
Higher | RA | 238 |
Higher | axSpA | 286 |
Higher | PsA | 170 |
education | diagnosis | n |
---|---|---|
Skipped question | RA | 53 |
Skipped question | axSpA | 105 |
Skipped question | PsA | 45 |
Mandatory | RA | 35 |
Mandatory | axSpA | 24 |
Mandatory | PsA | 20 |
Vocational | RA | 203 |
Vocational | axSpA | 204 |
Vocational | PsA | 140 |
Higher | RA | 151 |
Higher | axSpA | 200 |
Higher | PsA | 102 |
work | diagnosis | n |
---|---|---|
No answer | RA | 11 |
No answer | axSpA | 15 |
No answer | PsA | 12 |
Pension | RA | 497 |
Pension | axSpA | 199 |
Pension | PsA | 206 |
Productive | RA | 409 |
Productive | axSpA | 640 |
Productive | PsA | 385 |
work | diagnosis | n |
---|---|---|
No answer | RA | 3 |
No answer | axSpA | 10 |
No answer | PsA | 2 |
Pension | RA | 194 |
Pension | axSpA | 115 |
Pension | PsA | 99 |
Productive | RA | 245 |
Productive | axSpA | 408 |
Productive | PsA | 206 |
Data for Figure 5
diagnosis | patient_score | population | n | percentage |
---|---|---|---|---|
RA | 0 | New inclusion | 30 | 0.2100 |
RA | 1 | New inclusion | 24 | 0.1700 |
RA | 2 | New inclusion | 22 | 0.1500 |
RA | 3 | New inclusion | 14 | 0.0980 |
RA | 4 | New inclusion | 10 | 0.0700 |
RA | 5 | New inclusion | 14 | 0.0980 |
RA | 6 | New inclusion | 10 | 0.0700 |
RA | 7 | New inclusion | 2 | 0.0140 |
RA | 8 | New inclusion | 14 | 0.0980 |
RA | 9 | New inclusion | 1 | 0.0070 |
RA | 10 | New inclusion | 2 | 0.0140 |
RA | 0 | Patient at FU | 380 | 0.2700 |
RA | 1 | Patient at FU | 289 | 0.2100 |
RA | 2 | Patient at FU | 266 | 0.1900 |
RA | 3 | Patient at FU | 147 | 0.1000 |
RA | 4 | Patient at FU | 102 | 0.0730 |
RA | 5 | Patient at FU | 95 | 0.0680 |
RA | 6 | Patient at FU | 53 | 0.0380 |
RA | 7 | Patient at FU | 36 | 0.0260 |
RA | 8 | Patient at FU | 29 | 0.0210 |
RA | 9 | Patient at FU | 5 | 0.0036 |
RA | 10 | Patient at FU | 3 | 0.0021 |
axSpA | 0 | New inclusion | 17 | 0.1200 |
axSpA | 1 | New inclusion | 19 | 0.1400 |
axSpA | 2 | New inclusion | 24 | 0.1700 |
axSpA | 3 | New inclusion | 16 | 0.1200 |
axSpA | 4 | New inclusion | 22 | 0.1600 |
axSpA | 5 | New inclusion | 18 | 0.1300 |
axSpA | 6 | New inclusion | 6 | 0.0430 |
axSpA | 7 | New inclusion | 10 | 0.0720 |
axSpA | 8 | New inclusion | 3 | 0.0220 |
axSpA | 9 | New inclusion | 0 | 0.0000 |
axSpA | 10 | New inclusion | 3 | 0.0220 |
axSpA | 0 | Patient at FU | 255 | 0.2100 |
axSpA | 1 | Patient at FU | 253 | 0.2000 |
axSpA | 2 | Patient at FU | 202 | 0.1600 |
axSpA | 3 | Patient at FU | 154 | 0.1200 |
axSpA | 4 | Patient at FU | 120 | 0.0970 |
axSpA | 5 | Patient at FU | 104 | 0.0840 |
axSpA | 6 | Patient at FU | 73 | 0.0590 |
axSpA | 7 | Patient at FU | 46 | 0.0370 |
axSpA | 8 | Patient at FU | 24 | 0.0190 |
axSpA | 9 | Patient at FU | 6 | 0.0048 |
axSpA | 10 | Patient at FU | 2 | 0.0016 |
PsA | 0 | New inclusion | 16 | 0.1200 |
PsA | 1 | New inclusion | 16 | 0.1200 |
PsA | 2 | New inclusion | 22 | 0.1700 |
PsA | 3 | New inclusion | 21 | 0.1600 |
PsA | 4 | New inclusion | 10 | 0.0780 |
PsA | 5 | New inclusion | 18 | 0.1400 |
PsA | 6 | New inclusion | 10 | 0.0780 |
PsA | 7 | New inclusion | 6 | 0.0470 |
PsA | 8 | New inclusion | 6 | 0.0470 |
PsA | 9 | New inclusion | 2 | 0.0160 |
PsA | 10 | New inclusion | 1 | 0.0078 |
PsA | 0 | Patient at FU | 177 | 0.2000 |
PsA | 1 | Patient at FU | 187 | 0.2100 |
PsA | 2 | Patient at FU | 150 | 0.1700 |
PsA | 3 | Patient at FU | 130 | 0.1500 |
PsA | 4 | Patient at FU | 82 | 0.0940 |
PsA | 5 | Patient at FU | 66 | 0.0750 |
PsA | 6 | Patient at FU | 41 | 0.0470 |
PsA | 7 | Patient at FU | 27 | 0.0310 |
PsA | 8 | Patient at FU | 13 | 0.0150 |
PsA | 9 | Patient at FU | 4 | 0.0046 |
PsA | 10 | Patient at FU | 0 | 0.0000 |
GCA/PMR | 0 | New inclusion | 20 | 0.4900 |
GCA/PMR | 1 | New inclusion | 3 | 0.0730 |
GCA/PMR | 2 | New inclusion | 5 | 0.1200 |
GCA/PMR | 3 | New inclusion | 2 | 0.0490 |
GCA/PMR | 4 | New inclusion | 2 | 0.0490 |
GCA/PMR | 5 | New inclusion | 4 | 0.0980 |
GCA/PMR | 6 | New inclusion | 3 | 0.0730 |
GCA/PMR | 7 | New inclusion | 0 | 0.0000 |
GCA/PMR | 8 | New inclusion | 2 | 0.0490 |
GCA/PMR | 9 | New inclusion | 0 | 0.0000 |
GCA/PMR | 10 | New inclusion | 0 | 0.0000 |
GCA/PMR | 0 | Patient at FU | 105 | 0.7300 |
GCA/PMR | 1 | Patient at FU | 13 | 0.0900 |
GCA/PMR | 2 | Patient at FU | 9 | 0.0620 |
GCA/PMR | 3 | Patient at FU | 6 | 0.0420 |
GCA/PMR | 4 | Patient at FU | 5 | 0.0350 |
GCA/PMR | 5 | Patient at FU | 3 | 0.0210 |
GCA/PMR | 6 | Patient at FU | 1 | 0.0069 |
GCA/PMR | 7 | Patient at FU | 1 | 0.0069 |
GCA/PMR | 8 | Patient at FU | 1 | 0.0069 |
GCA/PMR | 9 | Patient at FU | 0 | 0.0000 |
GCA/PMR | 10 | Patient at FU | 0 | 0.0000 |
diagnosis | group | n |
---|---|---|
RA | Used mySCQM in 2024 | 383 |
RA | Former user | 104 |
RA | Never used mySCQM | 854 |
axSpA | Used mySCQM in 2024 | 420 |
axSpA | Former user | 141 |
axSpA | Never used mySCQM | 554 |
PsA | Used mySCQM in 2024 | 249 |
PsA | Former user | 68 |
PsA | Never used mySCQM | 490 |
GCA/PMR | Used mySCQM in 2024 | 22 |
GCA/PMR | Former user | 3 |
GCA/PMR | Never used mySCQM | 148 |
diagnosis | group | n |
---|---|---|
RA | 2024 | 524 |
RA | 2023 | 127 |
RA | 2 to 4 years ago | 121 |
RA | More than 4 years ago | 140 |
axSpA | 2024 | 596 |
axSpA | 2023 | 163 |
axSpA | 2 to 4 years ago | 127 |
axSpA | More than 4 years ago | 128 |
PsA | 2024 | 363 |
PsA | 2023 | 85 |
PsA | 2 to 4 years ago | 61 |
PsA | More than 4 years ago | 75 |
GCA/PMR | 2024 | 27 |
GCA/PMR | 2023 | 5 |
GCA/PMR | 2 to 4 years ago | 3 |
GCA/PMR | More than 4 years ago | 1 |
Data for Figure 7
diagnosis | group | n |
---|---|---|
RA | Less than a year | 105 |
RA | 1 to 3 years | 22 |
RA | 3 to 10 years | 12 |
RA | More than 10 years | 29 |
axSpA | Less than a year | 40 |
axSpA | 1 to 3 years | 33 |
axSpA | 3 to 10 years | 44 |
axSpA | More than 10 years | 45 |
PsA | Less than a year | 58 |
PsA | 1 to 3 years | 24 |
PsA | 3 to 10 years | 22 |
PsA | More than 10 years | 42 |
GCA/PMR | Less than a year | 40 |
GCA/PMR | 1 to 3 years | 3 |
GCA/PMR | 3 to 10 years | 1 |
GCA/PMR | More than 10 years | 7 |
time | n |
---|---|
Q1 2014 | 263 |
Q2 2014 | 279 |
Q3 2014 | 297 |
Q4 2014 | 313 |
Q1 2015 | 333 |
Q2 2015 | 351 |
Q3 2015 | 368 |
Q4 2015 | 394 |
Q1 2016 | 413 |
Q2 2016 | 435 |
Q3 2016 | 449 |
Q4 2016 | 467 |
Q1 2017 | 494 |
Q2 2017 | 511 |
Q3 2017 | 529 |
Q4 2017 | 545 |
Q1 2018 | 565 |
Q2 2018 | 576 |
Q3 2018 | 588 |
Q4 2018 | 601 |
Q1 2019 | 624 |
Q2 2019 | 643 |
Q3 2019 | 660 |
Q4 2019 | 678 |
Q1 2020 | 690 |
Q2 2020 | 708 |
Q3 2020 | 724 |
Q4 2020 | 756 |
Q1 2021 | 782 |
Q2 2021 | 796 |
Q3 2021 | 805 |
Q4 2021 | 819 |
Q1 2022 | 827 |
Q2 2022 | 832 |
Q3 2022 | 840 |
Q4 2022 | 849 |
Q1 2023 | 860 |
Q2 2023 | 866 |
Q3 2023 | 875 |
Q4 2023 | 884 |
Q1 2024 | 903 |
Q2 2024 | 916 |
Q3 2024 | 931 |
Q4 2024 | 947 |