Individual Study / SCQM

Swiss Clinical Quality Management in Rheumatic Diseases
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Swiss Clinical Quality Management in Rheumatic Diseases

Networks -
Datasets -
Variables -
Start Year
1997
Supplementary Information
Supplemental data is available with antibody test results for covid-19 infection, antibody titres measurements pre- and up to six months post covid-19 vaccination and patient reported questionnaires around covid. Also, in a sub-group of patients, more fine grained clinical and patient reported data is available from the pregnancy and reproduction cohort.
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Investigators Contacts
  • Dr. Sabine Adler
    Kantonsspital Aarau
  • Dr. Michael Andor
    RZO - Rheumatologie im Zürcher Oberland
  • Dr. Laure Brulhart Bletsas
    Hôpital Neuchâtelois
  • Dr. Adrian Ciurea
    Zürich University Hospital
  • Dr. Oliver Distler
    Universitätsspital Zürich
  • Dr. Axel Finckh
    HUG- Hospitaux Universitaires Geneve
  • Dr. Anna Grabowski
    StiRa
  • Dr. Fabienne Hirt
    StiRa
  • Dr. Thomas Hügle
    CHUV
  • Dr. Diego Kyburz
    Universitätsspital Basel
  • Dr. Christian Leemann
    Patient representative in the Foundation Board
  • Dr. Burkhard Möller
    Inselspital Bern
  • Prof. Andrea Rubbert-Roth
    St. Gallen Hospital
  • Dr. Almut Scherer
    SCQM Foundation

Design

Study design
Registry
Follow Up
After baseline, participants were followed-up annually at regular intervals, between 1 and 4 visits per year. Covid19 study participants were followed up from July 2020 to August 2021. Covacc study participants were followed up from February 2021 to June 2022. Vaccination study participants were followed up from September 2021 to August 2023.
Supplementary Information

Marker Paper

Uitz E, Fransen J, Langenegger T, Stucki G. Clinical quality management in rheumatoid arthritis: putting theory into practice. Swiss Clinical Quality Management in Rheumatoid Arthritis. Rheumatology (Oxford). 2000;39(5):542-9.

PUBMED 10852987

Recruitment

Recruitment Target
  • Individuals

Number of Participants

Number of Participants
20,096
Number of Participants with Biological Samples
Supplementary Information
Biological samples were collected from more than 3,300 patients and comprises more than 3,800 biokits (more than 3,500 DNA and more than 3,500 blood serum).

Access

Availability of data and biosamples

Possible Access to Data
Possible Access to Biosamples
Other
Yes
No
Not applicable
Don't know

Timeline

Populations

Selection Criteria
Newborns
Twins
Countries
  • Switzerland
Ethnic Origin
Health Status
  • Clinical diagnosis or suspicion of rheumatoid arthritis
Other Criteria

Recruitment

Sources of recruitment
  • Specific population
Specific Population
  • Clinic patients
Supplementary Information
Participants are included in the registry by the treating rheumatologist. The inclusion of the rheumatologist and the patients in the study is voluntary.

Number of Participants

Number of Participants
10,721
Number of Participants with Biological Samples
Data Collection Events
# Name Description Start End
0 SCQM - RA - Baseline Information about demographics, disease characteristics, concomitant treatments, comorbidities and adverse events was collected. Self-administered questionnaires such as Health Assessment ... 1997
1 SCQM - RA - Follow-up The visit of the patient was either regularly scheduled or at the initiative of the patient. Information about disease activity, anti-rheumatic treatments, side effects, reasons for ... 1998
26 SCQM - RA - Pregnancy registry preconception Information about disease activity and antirheumatic treatment was collected for women who have a desire to have a child. 2017
27 SCQM - RA - Pregnancy registry conception Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. A “history questionnaire” is filled out as soon as the patient indicates that ... 2017
28 SCQM - RA - Pregnancy registry first trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
29 SCQM - RA - Pregnancy registry second trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
30 SCQM - RA - Pregnancy registry third trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
31 SCQM - RA - Pregnancy registry 1 month postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications, health issues during pregnancy and delivery was collected. A “history ... 2017
32 SCQM - RA - Pregnancy registry 2 months postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. 2017
33 SCQM - RA - Pregnancy registry 6 months postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
34 SCQM - RA - Pregnancy registry 1 year postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
35 SCQM - RA - Pregnancy registry 2 years postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
36 SCQM - RA - Pregnancy registry 4 years postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
37 SCQM - RA - Covid19 Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020-07 2021-08
38 SCQM - RA - Covacc Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2021-02 2022-06
39 SCQM - RA - Vaccination Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2021-09 2023-08
Selection Criteria
Newborns
Twins
Countries
  • Switzerland
Ethnic Origin
Health Status
  • Clinical diagnosis or suspicion of ankylosing spondylitis or other forms of spondyloarthritis with predominantly axial
Other Criteria

Recruitment

Sources of recruitment
  • Specific population
Specific Population
  • Clinic patients
Supplementary Information
Patients were recruited by 177 rheumatologists in private practice (52% of the patients) as well as from the rheumatology departments at 42 hospitals (including 6 academic centers) from all geographic regions in Switzerland. The inclusion of the rheumatologist and the patients in the study is voluntary.

Number of Participants

Number of Participants
5,412
Number of Participants with Biological Samples
Data Collection Events
# Name Description Start End
0 SCQM - axSpA - Baseline Information about demographic and disease characteristics, concomitant treatments, laboratory values, and comorbidities were collected. In addition, information about disease state and quality of ... 2005
1 SCQM - axSpA - Follow-up Information about disease characteristics, concomitant treatments, laboratory values, comorbidities and adverse drug events was collected. In addition, information about socioeconomic (education ... 2006
18 SCQM - axSpA - Pregnancy registry preconception Information about disease activity and antirheumatic treatment was collected for women who have a desire to have a child. 2017
19 SCQM - axSpA - Pregnancy registry conception Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. A “history questionnaire” is filled out as soon as the patient indicates that ... 2017
20 SCQM - axSpA - Pregnancy registry first trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
21 SCQM - axSpA - Pregnancy registry second trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
22 SCQM - axSpA - Pregnancy registry third trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
23 SCQM - axSpA - Pregnancy registry 1 month postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications, health issues during pregnancy and delivery was collected. A “history ... 2017
24 SCQM - axSpA - Pregnancy registry 2 months postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. 2017
25 SCQM - axSpA - Pregnancy registry 6 months postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
26 SCQM - axSpA - Pregnancy registry 1 year postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
27 SCQM - axSpA - Pregnancy registry 2 years postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
28 SCQM - axSpA - Pregnancy registry 4 years postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
37 SCQM - axSpA - Covid19 Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020-07 2021-08
38 SCQM - axSpA - Covacc Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2021-02 2022-06
39 SCQM - axSpA - Vaccination Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2021-09 2023-08
40 SCQM - axSpA - Covid19 8 weeks post vaccination Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020
41 SCQM - axSpA - Covid19 12 weeks post vaccination Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020
42 SCQM - axSpA - Covid19 16 weeks post vaccination Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020
43 SCQM - axSpA - Covid19 20 weeks post vaccination Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020
44 SCQM - axSpA - Covid19 24 weeks post vaccination Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020
45 SCQM - axSpA - Covid19 36 weeks post vaccination Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020
46 SCQM - axSpA - Covid19 48 weeks post vaccination Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020
Selection Criteria
Newborns
Twins
Countries
  • Switzerland
Ethnic Origin
Health Status
  • Clinical diagnosis or suspicion of psoriatic arthritis
Other Criteria

Recruitment

Sources of recruitment
  • Specific population
Specific Population
  • Clinic patients
Supplementary Information
Participants are included in the registry by the treating rheumatologist. More than 65% of the rheumatologists, who contributed data on PsA patients, were from private practices. The inclusion of the rheumatologist and the patients in the study is voluntary.

Number of Participants

Number of Participants
2,892
Number of Participants with Biological Samples
Data Collection Events
# Name Description Start End
0 SCQM - PsA - Baseline Information about demographics, disease characteristics, concomitant treatments, comorbidities and adverse events was collected. Self-administered questionnaires such as Health Assessment ... 2006
1 SCQM - PsA - Follow-up Information about education, age at disease onset, patient- and physician-reported clinical endpoints (e.g., pain, skin manifestation, inflammatory markers), comorbidities, and medication use was ... 2007
17 SCQM - PsA - Pregnancy registry preconception Information about disease activity and antirheumatic treatment was collected for women who have a desire to have a child. 2017
18 SCQM - PsA - Pregnancy registry conception Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. A “history questionnaire” is filled out as soon as the patient indicates that ... 2017
19 SCQM - PsA - Pregnancy registry first trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
20 SCQM - PsA - Pregnancy registry second trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
21 SCQM - PsA - Pregnancy registry third trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
22 SCQM - PsA - Pregnancy registry 1 month postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications, health issues during pregnancy and delivery was collected. A “history ... 2017
23 SCQM - PsA - Pregnancy registry 2 months postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. 2017
24 SCQM - PsA - Pregnancy registry 6 months postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
25 SCQM - PsA - Pregnancy registry 1 year postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
26 SCQM - PsA - Pregnancy registry 2 years postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
27 SCQM - PsA - Pregnancy registry 4 years postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
37 SCQM - PsA - Covid19 Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020-07 2021-08
38 SCQM - PsA - Covacc Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2021-02 2022-06
39 SCQM - PsA - Vaccination Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2021-09 2023-08
Selection Criteria
Newborns
Twins
Countries
  • Switzerland
Ethnic Origin
Health Status
  • Clinical diagnosis or suspicion of undifferentiated inflammatory arthritis
Other Criteria

Recruitment

Sources of recruitment
  • Specific population
Specific Population
  • Clinic patients
Supplementary Information
Participants are included in the registry by the treating rheumatologist. The inclusion of the rheumatologist and the patients in the study is voluntary.

Number of Participants

Number of Participants
899
Number of Participants with Biological Samples
Data Collection Events
# Name Description Start End
0 SCQM - UA - Baseline Information about demographics, disease characteristics, concomitant treatments, comorbidities and adverses events was collected. Self-administered questionnaires such as Health Assessment ... 2009
1 SCQM - UA - Follow-up Information about education, age at disease onset, patient- and physician-reported clinical endpoints (e.g., pain, skin manifestation, inflammatory markers), comorbidities, and medication use was ... 2010
14 SCQM - UA - Pregnancy registry preconception Information about disease activity and antirheumatic treatment was collected for women who have a desire to have a child. 2017
15 SCQM - UA - Pregnancy registry conception Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. A “history questionnaire” is filled out as soon as the patient indicates that ... 2017
16 SCQM - UA - Pregnancy registry first trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
17 SCQM - UA - Pregnancy registry second trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
18 SCQM - UA - Pregnancy registry third trimester Information about disease activity, antirheumatic treatment and pregnancy was collected for women who are pregnant. 2017
19 SCQM - UA - Pregnancy registry 1 month postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications, health issues during pregnancy and delivery was collected. A “history ... 2017
20 SCQM - UA - Pregnancy registry 2 months postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. 2017
21 SCQM - UA - Pregnancy registry 6 months postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
22 SCQM - UA - Pregnancy registry 1 year postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
23 SCQM - UA - Pregnancy registry 2 years postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
24 SCQM - UA - Pregnancy registry 4 years postpartum Information about disease activity, antirheumatic treatment, course of pregnancy, fetal and maternal complications and delivery was collected for women who gave birth. Information about ... 2017
37 SCQM - UA - Covid19 Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020-07 2021-08
38 SCQM - UA - Covacc Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2021-02 2022-06
39 SCQM - UA - Vaccination Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2021-09 2023-08
Selection Criteria
Newborns
Twins
Countries
  • Switzerland
Ethnic Origin
Health Status
  • Clinical diagnosis or suspicion of giant cell arteritis
Other Criteria

Recruitment

Sources of recruitment
  • Specific population
Specific Population
  • Clinic patients
Supplementary Information
Participants are included in the registry by the treating rheumatologist. The inclusion of the rheumatologist and the patients in the study is voluntary.

Number of Participants

Number of Participants
124
Number of Participants with Biological Samples
Data Collection Events
# Name Description Start End
0 SCQM - GCA - Baseline Information about demographics, disease characteristics, concomitant treatments, comorbidities and adverses events was collected. Self-administered questionnaires such as Health Assessment ... 2020
1 SCQM - GCA - Follow-up Information about education, age at disease onset, patient- and physician-reported clinical endpoints (e.g., pain, skin manifestation, inflammatory markers), comorbidities, and medication use was ... 2021
37 SCQM - GCA - Covid19 Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020-07 2021-08
Selection Criteria
Newborns
Twins
Countries
  • Switzerland
Ethnic Origin
Health Status
  • Clinical diagnosis or suspicion of polymyalgia rheumatica
Other Criteria

Recruitment

Sources of recruitment
  • Specific population
Specific Population
  • Clinic patients
Supplementary Information
Participants are included in the registry by the treating rheumatologist. The inclusion of the rheumatologist and the patients in the study is voluntary.

Number of Participants

Number of Participants
48
Number of Participants with Biological Samples
Data Collection Events
# Name Description Start End
0 SCQM - PMR - Baseline Information about demographics, disease characteristics, concomitant treatments, comorbidities and adverses events was collected. Self-administered questionnaires such as Health Assessment ... 2020
1 SCQM - PMR - Follow-up Information about education, age at disease onset, patient- and physician-reported clinical endpoints (e.g., pain, skin manifestation, inflammatory markers), comorbidities, and medication use was ... 2021
37 SCQM - PMR - Covid19 Information was collected about immunity after infection with coronavirus, immunity after vaccination against the coronavirus, antibodies after vaccination against the coronavirus, ... 2020-07 2021-08

Classifications

Socio-demographic and economic characteristics
Lifestyle and behaviours
Birth, pregnancy and reproductive health history
Perception of health, quality of life, development and functional limitations
Diseases
Symptoms and signs
Medication and supplements
Non-pharmacological interventions
Health and community care services utilization
Death
Physical measures and assessments
Laboratory measures
Cognition, personality and psychological measures and assessments
Life events, life plans, beliefs and values
Preschool, school and work life
Social environment and relationships
Physical environment
Administrative information
Perception of health
Quality of life
Life course development
Functional limitations
Other perception of health, quality of life and functional limitation-related information

Socio-demographic and economic characteristics

Age/birthdate
Sex/gender
Education
Language
Labour force and retirement
Income, possessions, and benefits

Lifestyle and behaviours

Tobacco
Alcohol
Breastfeeding
Physical activity

Birth, pregnancy and reproductive health history

Puberty, menstruation, menopause and andropause
Pregnancy, delivery and birth
Fertility and sexual health

Perception of health, quality of life, development and functional limitations

Perception of health
Quality of life
Functional limitations
Use of assistive devices
Other perception of health, quality of life and functional limitation-related information

Diseases

Certain infectious and parasitic diseases (A00-B99)
Neoplasms (C00-D48)
Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism (D50-D89)
Endocrine, nutritional and metabolic diseases (E00-E90)
Mental and behavioural disorders (F00-F99)
Diseases of the nervous system (G00-G99)
Diseases of the eye and adnexa (H00-H59)
Diseases of the circulatory system (I00-I99)
Diseases of the respiratory system (J00-J99)
Diseases of the digestive system (K00-K93)
Diseases of the skin and subcutaneous tissue (L00-L99)
Diseases of the musculoskeletal system and connective tissue (M00-M99)
Diseases of the genitourinary system (N00-N99)
Pregnancy, childbirth and the puerperium (O00-O9A)
Certain conditions originating in the perinatal period (P00-P96)
Congenital malformations, deformations and chromosomal abnormalities (Q00-Q99)
Injury, poisoning and certain other consequences of external causes (S00-T98)
Diseases without precise specification or falling into multiple categories

Symptoms and signs

Symptoms and signs involving the circulatory and respiratory systems (R00-R09)
Symptoms and signs involving the digestive system and abdomen (R10-R19)
Symptoms and signs involving the skin and subcutaneous tissue (R20-R23)
Symptoms and signs involving the urinary system (R30-R39)
General symptoms and signs (R50-R69)
Symptoms related to multiple categories

Medication and supplements

Medication and supplement intake
Posology and protocol of administration

Non-pharmacological interventions

Surgical interventions
Radiological interventions
Physical therapy interventions
Educational and health promotion interventions
Laboratory diagnosis interventions
Other and unspecified non-pharmacological interventions

Health and community care services utilization

Visits to health professionals
Hospitalizations
Community and social care

Death

Vital status
Cause of death

Physical measures and assessments

Physical characteristics
Anthropometry
Circulation and respiration
Muscles, skeleton and mobility
Sensory and pain
Other physical measures and assessments

Laboratory measures

Hematology
Biochemistry
Immunology
Histology

Preschool, school and work life

Work life

Social environment and relationships

Social support

Administrative information

Identifiers
Date and time-related information
Questionnaire and interview-related information
Physical and cognitive measure and biosample-related information
Data and sample collection center-related information
Other administrative information

Quality of life

Dermatology Life Quality Index
EuroQol Five Dimensions Questionnaire
EuroQol Visual Analogue Scale
Short-Form 12 Health Survey

Functional limitations

Bath Ankylosing Spondylitis Functional Index
Health Assessment Questionnaire Disability Index

Other perception of health, quality of life and functional limitation-related information

Assessment of Spondyloarthritis International Society Health Index