This report provides an overview on the data and information collected in the past year (2023) 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 2024-04-01.
Where not otherwise specified we report data or information on the SCQM patient populations at the end of 2023. 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 2023 the main SCQM research cohorts encompass 19561 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 2023.
Variable
Level
Overall
RA
axSpA
PsA
GCA/PMR
N of patients
19561
10585
5460
3100
416
Collection start
1997
2005
2006
2020
Year of inclusion (median [IQR])
2011 [2006, 2016]
2009 [2003, 2014]
2013 [2009, 2017]
2014 [2010, 2018]
2022 [2021, 2022]
Clinical FU status (%)
Visit in 2023
3764 (19.2)
1523 (14.4)
1247 (22.8)
815 (26.3)
179 (43.0)
Visit in 2022
1206 (6.2)
515 (4.9)
337 (6.2)
247 (8.0)
107 (25.7)
Officially discontinued
7379 (37.7)
4892 (46.2)
1681 (30.8)
798 (25.7)
8 (1.9)
Inactive for at least 2 years
7212 (36.9)
3655 (34.5)
2195 (40.2)
1240 (40.0)
122 (29.3)
Year of last visit (median [IQR])
2018 [2012, 2023]
2016 [2009, 2021]
2019 [2014, 2023]
2021 [2016, 2023]
2023 [2022, 2023]
Years of clinical FU (median [IQR])
3.72 [1.03, 8.21]
4.22 [1.21, 8.91]
3.26 [0.94, 7.59]
3.53 [1.03, 7.68]
0.66 [0.00, 1.83]
Visits per patient (mean (SD))
6.36 (5.95)
7.10 (6.66)
5.46 (4.79)
5.83 (5.03)
3.41 (3.43)
mySCQM entries per patient (mean (SD))
4.92 (14.37)
3.50 (12.09)
6.83 (16.71)
6.88 (17.00)
1.18 (5.43)
Institution of inclusion visit (%)
hospital
4254 (21.7)
2374 (22.4)
1269 (23.2)
558 (18.0)
53 (12.7)
private practice
10878 (55.6)
6019 (56.9)
2940 (53.8)
1864 (60.1)
55 (13.2)
university hospital
4429 (22.6)
2192 (20.7)
1251 (22.9)
678 (21.9)
308 (74.0)
Switched institution (%)
All visits at inclusion site
17353 (88.7)
9353 (88.4)
4795 (87.8)
2793 (90.1)
412 (99.0)
Visits in multiple institutions
2208 (11.3)
1232 (11.6)
665 (12.2)
307 (9.9)
4 (1.0)
2 Core Data
Key Numbers
In 2023 the SCQM recorded 5884 visits from 4736 patients. Among these 622 patients were new inclusions. Furthermore, 18104 mySCQM entries were made by 2543 patients. Among these 272 were new mySCQM users. Visits were recorded by 276 doctors spread across 98 institutions in 17 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 2023.
Variable
Level
Overall
RA
axSpA
PsA
GCA/PMR
N of visits
5884
2349
1891
1353
291
Visit-related patient questionnaire (%)
Included
3342 (56.8)
1271 (54.1)
1164 (61.6)
821 (60.7)
86 (29.6)
Not included
2542 (43.2)
1078 (45.9)
727 (38.4)
532 (39.3)
205 (70.4)
Visit number within patient (%)
Inclusion
622 (10.6)
158 (6.7)
216 (11.4)
149 (11.0)
99 (34.0)
2nd visit
561 (9.5)
171 (7.3)
174 (9.2)
143 (10.6)
73 (25.1)
3rd, 4th or 5th
1308 (22.2)
455 (19.4)
422 (22.3)
345 (25.5)
86 (29.6)
6th, 7th or 8th
970 (16.5)
408 (17.4)
327 (17.3)
220 (16.3)
15 (5.2)
9th visit or higher
2423 (41.2)
1157 (49.3)
752 (39.8)
496 (36.7)
18 (6.2)
Years since symptom onset (median [IQR])
13.34 [7.01, 21.61]
13.33 [7.35, 21.03]
15.31 [8.79, 24.27]
13.02 [7.02, 21.03]
1.77 [0.51, 3.56]
Years since diagnosis (median [IQR])
9.99 [4.61, 16.45]
11.59 [6.11, 18.51]
9.91 [4.72, 15.88]
9.43 [4.16, 15.85]
1.24 [0.34, 2.95]
Type of institution (%)
hospital
930 (15.8)
365 (15.5)
342 (18.1)
184 (13.6)
39 (13.4)
private practice
3309 (56.2)
1330 (56.6)
1076 (56.9)
841 (62.2)
62 (21.3)
university hospital
1645 (28.0)
654 (27.8)
473 (25.0)
328 (24.2)
190 (65.3)
Per patient
N patients with visits
4736
1901
1559
1061
215
N of visits per patient (mean (SD))
1.24 (0.67)
1.24 (0.68)
1.21 (0.61)
1.28 (0.71)
1.35 (0.84)
Year of inclusion (median [IQR])
2017 [2012, 2021]
2015 [2011, 2020]
2017 [2012, 2021]
2018 [2013, 2022]
2022 [2021, 2023]
Table 3: Characterisation of the population of newly participating patients throughout 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
622
158
216
149
99
Age* at inclusion (median [IQR])
54 [41, 65]
59 [48, 66]
42 [33, 51]
55 [44, 62]
74 [66.50, 79.50]
Years since symptom onset (median [IQR])
6.06 [1.65, 13.43]
4.41 [1.82, 9.69]
9.81 [3.51, 16.55]
8.70 [4.42, 15.16]
0.37 [0.12, 1.69]
Years since diagnosis (median [IQR])
2.03 [0.47, 6.80]
2.92 [1.08, 6.80]
2.61 [0.62, 8.42]
3.35 [1.05, 9.30]
0.16 [0.02, 1.04]
Type of institution (%)
hospital
116 (18.6)
26 (16.5)
43 (19.9)
23 (15.4)
24 (24.2)
private practice
284 (45.7)
82 (51.9)
105 (48.6)
84 (56.4)
13 (13.1)
university hospital
222 (35.7)
50 (31.6)
68 (31.5)
42 (28.2)
62 (62.6)
Table 4: Characterisation of the population that contributed to SCQM via mySCQM self-observations throughout 2023. *refers to patients that used the app in 2023, but not in 2022. **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
18104
6756
6774
4271
303
Entry number within patient (%)
1st entry
272 (1.5)
69 (1.0)
130 (1.9)
56 (1.3)
17 (5.6)
2nd to 10th
2046 (11.3)
547 (8.1)
934 (13.8)
457 (10.7)
108 (35.6)
11th to 40th
9904 (54.7)
4005 (59.3)
3368 (49.7)
2391 (56.0)
140 (46.2)
41th to 100th
5598 (30.9)
2090 (30.9)
2174 (32.1)
1296 (30.3)
38 (12.5)
101th entry or higher
284 (1.6)
45 (0.7)
168 (2.5)
71 (1.7)
0 (0.0)
Per patient
N patients with entries
2543
935
1012
564
32
N of entries per patient (mean (SD))
7.12 (5.28)
7.23 (4.98)
6.69 (5.40)
7.57 (5.20)
9.47 (9.18)
User history (%)
New user
272 (10.7)
69 (7.4)
130 (12.8)
56 (9.9)
17 (53.1)
Ongoing user
2173 (85.5)
826 (88.3)
837 (82.7)
495 (87.8)
15 (46.9)
Returning* user
98 (3.9)
40 (4.3)
45 (4.4)
13 (2.3)
0 (0.0)
Years of continued** usage (mean (SD))
3.18 (1.98)
3.26 (1.88)
3.24 (2.12)
3.07 (1.83)
0.59 (0.71)
Year of last visit (median [IQR])
2023 [2022, 2023]
2023 [2021, 2023]
2023 [2022, 2023]
2023 [2022, 2023]
2023 [2023, 2023]
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 2023 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.
(a) 2023, Cutoff: 100 visits
Rank
Institution
Type of institution
Canton
Change from 2022*
1
Inselspital Bern
UH
BE
2
Universitätsspital Zürich
UH
ZH
3
Centre hospitalier universitaire vaudois
UH
VD
4
Rheuma Basel
PP
BS
+3
5
Hôpitaux universitaires de Genève
UH
GE
-1
6
Praxis Dr. Manuel Klöti
PP
LU
7
Kantonsspital St. Gallen
H
SG
+1
8
Praxis Mathieu, Solothurn
PP
SO
+1
9
Rheumazentrum Laufen, Laufen
PP
BL
+3
10
Praxis Zajec, Wettingen
PP
AG
11
Ultraschall Zentrum Rheumatologie, Basel
PP
BS
+4
12
Hôpital La Chaux-de-Fonds
H
NE
+2
13
Praxis Hüllstrung/Iseli
PP
BL
-2
14
Universitätsspital Basel
UH
BS
-9
15
OsteoRheumaBern
PP
BE
-2
16
Rheumatologie im Zürcher Oberland, Uster
PP
ZH
17
Rheumapraxis Sursee, Sursee
PP
LU
+3
18
rheuma-bern
PP
BE
19
Cabinet Rozier Aubry
PP
VD
+26
20
Kantonsspital Baden, Standort Brugg
H
AG
-1
21
Praxis Tölle, Basel
PP
BS
+1
22
Kantonsspital Aarau
H
AG
+44
(b) Top 20 across entire SCQM
Rank
Institution
Type of institution
Canton
Best year**
Change from 2022*
1
Universitätsspital Zürich
UH
ZH
2018
2
Inselspital Bern
UH
BE
2018
3
Hôpitaux universitaires de Genève
UH
GE
2017
4
Centre hospitalier universitaire vaudois
UH
VD
2023
5
Rheuma Basel
PP
BS
2023
6
Kantonsspital St. Gallen
H
SG
2015
7
Bethesda-Spital, Basel
H
BS
2016
8
Kantonsspital Aarau
H
AG
2017
9
Praxis Dr. Manuel Klöti
PP
LU
2019
+1
10
Universitätsspital Basel
UH
BS
2021
+1
11
Praxis Martin, Liestal
PP
BL
2012
-2
12
OsteoRheumaBern
PP
BE
2017
13
Kantonsspital Luzern, Luzern 16
H
LU
2012
14
Kantonsspital Winterthur, Winterthur
H
ZH
2014
15
Medizinisches Zentrum Brugg, Brugg
PP
AG
2016
16
Hôpital La Chaux-de-Fonds
H
NE
2017
+1
17
Berner Rheumazentrum, Bern
PP
BE
2018
-1
18
Bürgerspital Solothurn, Solothurn
H
SO
2013
19
Praxis Hüllstrung/Iseli
PP
BL
2021
+2
20
Klinik Impuls, Wetzikon
PP
ZH
2021
-1
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.
(a) 2023, Cutoff: 10 inclusions
Rank
Institution
Type of institution
Canton
Change from 2022*
1
Inselspital Bern
UH
BE
2
Universitätsspital Zürich
UH
ZH
+1
3
Universitätsspital Basel
UH
BS
-1
4
Cabinet Rozier Aubry
PP
VD
+21
5
Praxis Mathieu, Solothurn
PP
SO
+3
6
Hôpital La Chaux-de-Fonds
H
NE
+1
7
Rheuma Basel
PP
BS
+3
8
Hôpitaux universitaires de Genève
UH
GE
-2
9
Centre hospitalier universitaire vaudois
UH
VD
-4
10
Ultraschall Zentrum Rheumatologie, Basel
PP
BS
-1
11
Praxis Dr. Manuel Klöti
PP
LU
12
Hirslanden Klinik Birshof, Münchenstein
H
BL
+14
13
Praxis Tölle, Basel
PP
BS
+14
14
Rheumapraxis Sursee, Sursee
PP
LU
-2
15
Stadtspital Triemli, Zürich
H
ZH
+28
16
Rheumazentrum Laufen, Laufen
PP
BL
+7
17
Universitätsklinik Balgrist, Zürich
H
ZH
+11
(b) Top 20 across entire SCQM
Rank
Institution
Type of Institution
Canton
Best year**
Change from 2022*
1
Universitätsspital Zürich
UH
ZH
1996
2
Inselspital Bern
UH
BE
2014
3
Centre hospitalier universitaire vaudois
UH
VD
2011
4
Hôpitaux universitaires de Genève
UH
GE
2017
5
Kantonsspital St. Gallen
H
SG
2012
6
Universitätsspital Basel
UH
BS
2016
7
Rheuma Basel
PP
BS
2009
8
Kantonsspital Aarau
H
AG
2016
9
Praxis Dr. Manuel Klöti
PP
LU
2013
+2
10
Bethesda-Spital, Basel
H
BS
2011
-1
11
Universitätsklinik Balgrist, Zürich
H
ZH
2008
+1
12
OsteoRheumaBern
PP
BE
2016
-2
13
Kantonsspital Winterthur, Winterthur
H
ZH
2013
14
Hôpital La Chaux-de-Fonds
H
NE
2015
+1
15
Kantonsspital Luzern, Luzern 16
H
LU
2011
-1
16
Berner Rheumazentrum, Bern
PP
BE
2018
17
Bürgerspital Solothurn, Solothurn
H
SO
2010
18
Klinik Impuls, Wetzikon
PP
ZH
2005
19
Praxis Mathieu, Solothurn
PP
SO
2023
+7
20
Praxis Martin, Liestal
PP
BL
2012
-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.
(a) 2023, Cutoff: 5 mySCQM activations
Rank
Institution
Type of institution
Canton
Change from 2022*
1
Universitätsspital Zürich
UH
ZH
2
Rheuma Basel
PP
BS
+4
3
Centre hospitalier universitaire vaudois
UH
VD
-1
4
Praxis Dr. Manuel Klöti
PP
LU
+1
5
Inselspital Bern
UH
BE
+2
6
Cabinet Rozier Aubry
PP
VD
+33
7
Hôpitaux universitaires de Genève
UH
GE
-4
8
Ultraschall Zentrum Rheumatologie, Basel
PP
BS
+9
9
Hirslanden Klinik Birshof, Münchenstein
H
BL
+7
10
Kantonsspital Baden, Standort Brugg
H
AG
-1
11
Universitätsspital Basel
UH
BS
+2
12
Praxis Tölle, Basel
PP
BS
+7
13
Hôpital La Chaux-de-Fonds
H
NE
-5
14
Rheumatologie im Zürcher Oberland, Uster
PP
ZH
-4
15
Universitätsklinik Balgrist, Zürich
H
ZH
+12
16
Kantonsspital Winterthur, Winterthur
H
ZH
+5
17
Praxis Hüllstrung/Iseli
PP
BL
-5
(b) Top 20 across entire SCQM
Rank
Institution
Type of Institution
Canton
Best year**
Change from 2022*
1
Universitätsspital Zürich
UH
ZH
2020
2
Inselspital Bern
UH
BE
2020
3
Hôpitaux universitaires de Genève
UH
GE
2020
4
Rheuma Basel
PP
BS
2020
5
Praxis Dr. Manuel Klöti
PP
LU
2020
6
Centre hospitalier universitaire vaudois
UH
VD
2020
+1
7
Kantonsspital St. Gallen
H
SG
2020
-1
8
Praxis Hüllstrung/Iseli
PP
BL
2020
9
Rheumatologie im Zürcher Oberland, Uster
PP
ZH
2020
+1
10
OsteoRheumaBern
PP
BE
2020
-1
11
Klinik Impuls, Wetzikon
PP
ZH
2020
12
Hôpital La Chaux-de-Fonds
H
NE
2020
13
Universitätsspital Basel
UH
BS
2020
14
Praxis Tölle, Basel
PP
BS
2020
15
Universitätsklinik Balgrist, Zürich
H
ZH
2020
16
Praxis Martin, Liestal
PP
BL
2019
17
Studio Medico Badaracco Cattaneo, Lugano
PP
TI
2017
18
Kantonsspital Baden, Standort Brugg
H
AG
2020
+3
19
Praxis Widrig-Bernhardt, St. Gallen
PP
SG
2020
-1
20
Ultraschall Zentrum Rheumatologie, Basel
PP
BS
2020
+3
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 2023 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 2023. 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 2023. 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 2023. Patients who had visits in multiple cantons during 2023 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 2023. 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
(d) Patients who participiated in mySCQM split by generation
(e) Patients who had a visit split by level of education
(f) Patients who participiated in mySCQM split by level of education
(g) Patients who had a visit split by work status
(h) Patients who participiated in mySCQM split by work status
Figure 5: Demographics of patients who had a visit or participated in mySCQM in 2023. Figures for education and work status exclude patients where no recent (last two years) information is available and discard anything but the most recent information provided by each patient. Furthermore education and work status is not collected for all cohorts
Figure 6: Estimate of global disease activity by patients at their earliest visit in 2023. See Table 11 for the exact values.
(a) Share of mySCQM use among patients with a visit
(b) Timing of most recenct visit among patients participating in mySCQM
Figure 7: Overlap between visits and mySCQM evaluated based on patients participating throughout 2023.
Figure 8: Interval between symptom onset date and diagnosis date for the new inclusions throughout 2023. Patients missing either date are excluded from this figure.
5 Special Collection
Unclassified Arthritis
Up to and including 2023, the SCQM has recorded 4079 visits from 889 patients within the Unclassified Arthritis cohort. 35 new UA patients were included in 2023. Furthermore, 7246 mySCQM entries were made by 271 UA patients. The number of UA patients using mySCQM has grown by 11. 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.
Figure 9: Cumulative number of patients within the SCQM Unclassified Arthritis cohort at the conclusion of 2023.
Xrays
Up to and including 2023, 45884 sets of Xrays from 12491 patients were shared with the SCQM for use in research. 587 image sets were added in 2023, of which 136 were the first sets of their respective patients. Table 8 provides a description of the these images.
Table 8: Summary of SCQM Xray collection and the patients who contributed to it at the conclusion of 2023. *active refers to patient with a visit in 2023.
Variable
Level
Overall
RA
axSpA
PsA
GCA/PMR
UA
N of Xray sets
45884
33010
12122
427
12
313
Requested
Hands and feet
Pelvis, vertebra, spine
RA + axSpA images
none
none
Score
Ratingen
mNYC
none
-
-
Taken X years after symptom onset (median [IQR])
10.04 [4.78, 17.88]
9.16 [4.40, 16.58]
12.66 [6.29, 21.50]
10.32 [5.02, 18.49]
-
7.13 [3.23, 13.29]
Taken X years after inclusion (median [IQR])
2.16 [0.00, 5.32]
2.38 [0.02, 5.81]
1.97 [0.00, 4.39]
1.86 [0.00, 4.27]
-
2.01 [0.02, 4.34]
Per patient
N patients with sets
12480
8751
3472
163
-
92
Coverage of entire cohort
61%
83%
64%
5.3%
-
10%
Sets per patient (mean (SD))
3.67 (3.43)
3.77 (3.21)
3.49 (3.95)
2.62 (2.60)
-
3.40 (3.70)
Active* patients
N active* patient with sets
2133
1273
811
38
-
10
Coverage of active* cohort
54%
84%
65%
4.7%
-
5%
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 4305 biosamples from 3792 patients. Contributions have been enabled by 116 different institutions, spread across 18 cantons. 225 new samples were added in 2023.
Table 9: Summary of the SCQM Biobank and the patients who contributed to it at the conclusion of 2023. *active refers to patient with a visit in 2023.
Variable
Level
Overall
RA
axSpA
PsA
GCA/PMR
UA
N of biosamples
4305
2076
1273
680
104
172
Includes (%)
DNA and serum
3981 (92.5)
1932 (93.1)
1144 (89.9)
646 (95.0)
101 (97.1)
158 (91.9)
Just DNA
15 (0.3)
8 (0.4)
5 (0.4)
0 (0.0)
1 (1.0)
1 (0.6)
Just serum
309 (7.2)
136 (6.6)
124 (9.7)
34 (5.0)
2 (1.9)
13 (7.6)
Taken X years after symptom onset (median [IQR])
9.68 [4.55, 17.93]
9.24 [4.40, 17.78]
12.22 [6.33, 20.77]
9.06 [4.43, 16.62]
1.67 [0.51, 3.42]
5.51 [2.89, 11.63]
Taken X years after inclusion (median [IQR])
1.50 [0.05, 5.32]
1.98 [0.14, 6.89]
1.54 [0.02, 5.00]
1.00 [0.00, 3.95]
0.42 [0.03, 1.25]
0.46 [0.00, 2.28]
Per patient
N patients with samples
3791
1845
1069
625
101
151
Coverage of entire cohort
19%
17%
20%
20%
24%
17%
Samples per patient (mean (SD))
1.14 (0.47)
1.13 (0.45)
1.19 (0.58)
1.09 (0.33)
1.03 (0.17)
1.14 (0.54)
Active* patients
N active* patient with samples
1122
487
334
197
62
42
Coverage of active* cohort
28%
32%
27%
24%
35%
21%
RePreg
The collaboration between the SCQM and the Reproduction and Pregnancy in inflammatory rheumatic diseases cohort has led to records of 286 pregnancies from 229 patients. Among these, 239 pregnancies have both concluded and been tracked throughout. Tracking has then continued for 242 of the resulting children. 44 pregnancies have finished the post-natal questionnaires. Table 10 presents the current status of the ongoing collection efforts.
Table 10: Snapshot of RePreg data collection at the conclusion of 2023. *patients who indicated plans to conceive within the coming months.
RA
axSpA
PsA
GCA/PMR
UA
Total
Ongoing
Preparing* for pregnancy
59
59
18
0
10
146
Pregnant
12
17
7
0
3
39
Other
Willing to participate in future
64
74
25
0
27
190
Cumulative number of past pregnancies
88
117
45
0
36
286
Number of pregnancies with finished data collection
16
14
5
0
9
44
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