Swiss Systemic Lupus Erythematosus Cohort Study
The objectives of this study are:
* To respond to the necessity of better understanding the history of Systemic lupus erythematosus (SLE) and the mechanisms involved in its pathogenesis;
* To identify and apply new therapeutic and prevention strategies; and
* To analyze the impact that SLE has at the social and personal levels in Switzerland.
Overview
- Acronym
- SSCS
- Website
- SSCS
- Investigators
-
- Contacts
-
General Design
- Study design
- Cohort
- Start - End Year
- 2007 - 2030
- General Information on Follow Up (profile, frequency)
-
After baseline, participants are followed-up once per year or in case of flares. Additional patient-reported outcomes take place twice yearly as planned.
- Recruitment Target
-
- Individuals
- Number of Participants
- 1,010
- Number of Participants with Biological Samples
- 1,010
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
|
Marker Papers
Ribi C, Trendelenburg M, Gayet-Ageron A, et al. The Swiss Systemic lupus erythematosus Cohort Study (SSCS) - cross-sectional analysis of clinical characteristics and treatments across different medical disciplines in Switzerland. Swiss Medical Weekly, 2014;144:w13990
PUBMED 25115978Timeline
Populations
SSCS - SLE
The population is composed of adult patients with systemic lupus erythematosus from 8 different Swiss hospitals.
Selection Criteria
- Minimum age
-
18
- Countries
-
- Switzerland
- Territory
- Basel, Bern, Geneva, Vaud, Schaffhausen, St. Gallen, Valais, Zürich
- Health Status
-
- Diagnosed systemic lupus erythematosus
Sources of Recruitment
- Specific Population
-
- Clinic patients
- Supplementary Information
-
Patients included originated from Clinical Immunology, Internal Medicine, Nephrology, and Rheumatology tertiary centres located in the French-speaking and the German-speaking regions of Switzerland.
Sample Size
- Number of Participants
- 879
- Number of Participants with Biological Samples
- 879
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | SSCS - SLE - Baseline |
|
|
2007 (April) | 2030 (March) |
| 1 | SSCS - SLE - Follow-up 1 |
|
|
2008 (January) | 2008 (December) |
| 2 | SSCS - SLE - Follow-up 2 |
|
|
2009 (January) | 2009 (December) |
| 3 | SSCS - SLE - Follow-up 3 |
|
|
2010 (January) | 2010 (December) |
| 4 | SSCS - SLE - Follow-up 4 |
|
|
2011 (January) | 2011 (December) |
| 5 | SSCS - SLE - Follow-up 5 |
|
|
2012 (January) | 2012 (December) |
| 6 | SSCS - SLE - Follow-up 6 |
|
|
2013 (January) | 2013 (December) |
| 7 | SSCS - SLE - Follow-up 7 |
|
|
2014 (January) | 2014 (December) |
| 8 | SSCS - SLE - Follow-up 8 |
|
|
2015 (January) | 2015 (December) |
| 9 | SSCS - SLE - Follow-up 9 |
|
|
2016 (January) | 2016 (December) |
| 10 | SSCS - SLE - Follow-up 10 |
|
|
2017 (January) | 2017 (December) |
| 11 | SSCS - SLE - Follow-up 11 |
|
|
2018 (January) | 2018 (December) |
| 12 | SSCS - SLE - Follow-up 12 |
|
|
2019 (January) | 2019 (December) |
| 13 | SSCS - SLE - Follow-up 13 |
|
|
2020 (January) | 2020 (December) |
| 14 | SSCS - SLE - Follow-up 14 |
|
|
2021 (January) | 2021 (December) |
| 15 | SSCS - SLE - Follow-up 15 |
|
|
2022 (January) | 2022 (December) |
| 16 | SSCS - SLE - Follow-up 16 |
|
|
2023 (January) | 2023 (December) |
| 17 | SSCS - SLE - Follow-up 17 |
|
|
2024 (January) | 2024 (December) |
| 18 | SSCS - SLE - Follow-up 18 |
|
|
2025 (January) | 2025 (December) |
| 19 | SSCS - SLE - Follow-up 19 |
|
|
2026 (January) | 2026 (December) |
| 20 | SSCS - SLE - Follow-up 20 |
|
|
2027 (January) | 2027 (December) |
| 21 | SSCS - SLE - Follow-up 21 |
|
|
2028 (January) | 2028 (December) |
| 22 | SSCS - SLE - Follow-up 22 |
|
|
2029 (January) | 2029 (December) |
| 23 | SSCS - SLE - Follow-up 23 |
|
|
2030 (January) | 2030 (December) |
SSCS - HV
The population is composed of adult healthy volunteers from 8 different Swiss cities.
Selection Criteria
- Minimum age
-
18
- Countries
-
- Switzerland
- Territory
- Basel, Bern, Geneva, Vaud, Schaffhausen, St. Gallen, Valais, Zürich
- Health Status
-
- Absence of autoimmune disease or immunomodulatory treatment
- Other Criteria
- Exclusion criteria: Has fever or viral symptoms the week before blood sampling
Sources of Recruitment
- Specific Population
-
- Clinic patients
- Supplementary Information
-
Participants were selected from the Geneva Blood donation bank following classical guidelines on assessing donor suitability for blood donation, or were recruited by public notice in the Centre Hospitalier Universitaire Vaudois (CHUV) and were evaluated medically to confirm the good health and absence of autoimmune disease or immunomodulatory treatment.
Sample Size
- Number of Participants
- 64
- Number of Participants with Biological Samples
- 64
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | SSCS - HV - Baseline |
|
|
2017 (April) | 2030 (March) |
| 1 | SSCS - HV - Follow-up 1 |
|
|
2018 (January) | 2018 (December) |
| 2 | SSCS - HV - Follow-up 2 |
|
|
2019 (January) | 2019 (December) |
| 3 | SSCS - HV - Follow-up 3 |
|
|
2020 (January) | 2020 (December) |
| 4 | SSCS - HV - Follow-up 4 |
|
|
2021 (January) | 2021 (December) |
| 5 | SSCS - HV - Follow-up 5 |
|
|
2022 (January) | 2022 (December) |
| 6 | SSCS - HV - Follow-up 6 |
|
|
2023 (January) | 2023 (December) |
| 7 | SSCS - HV - Follow-up 7 |
|
|
2024 (January) | 2024 (December) |
| 8 | SSCS - HV - Follow-up 8 |
|
|
2025 (January) | 2025 (December) |
| 9 | SSCS - HV - Follow-up 9 |
|
|
2026 (January) | 2026 (December) |
| 10 | SSCS - HV - Follow-up 10 |
|
|
2027 (January) | 2027 (December) |
| 11 | SSCS - HV - Follow-up 11 |
|
|
2028 (January) | 2028 (December) |
| 12 | SSCS - HV - Follow-up 12 |
|
|
2029 (January) | 2029 (December) |
| 13 | SSCS - HV - Follow-up 13 |
|
|
2030 (January) | 2030 (December) |
SSCS - pSS
The population is composed of adult patients with primary Sjoegren's syndrome from 8 different Swiss hospitals.
Selection Criteria
- Minimum age
-
18
- Countries
-
- Switzerland
- Territory
- Basel, Bern, Geneva, Vaud, Schaffhausen, St. Gallen, Valais, Zürich
- Health Status
-
- Diagnosed Sjoegren's syndrome
Sources of Recruitment
- Specific Population
-
- Clinic patients
Sample Size
- Number of Participants
- 32
- Number of Participants with Biological Samples
- 32
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | SSCS - pSS - Baseline |
|
|
2017 (April) | 2030 (March) |
| 1 | SSCS - pSS - Follow-up 1 |
|
|
2018 (April) | 2018 (December) |
| 2 | SSCS - pSS - Follow-up 2 |
|
|
2019 (January) | 2019 (December) |
| 3 | SSCS - pSS - Follow-up 3 |
|
|
2020 (January) | 2020 (December) |
| 4 | SSCS - pSS - Follow-up 4 |
|
|
2021 (January) | 2021 (December) |
| 5 | SSCS - pSS - Follow-up 5 |
|
|
2022 (January) | 2022 (December) |
| 6 | SSCS - pSS - Follow-up 6 |
|
|
2023 (January) | 2023 (December) |
| 7 | SSCS - pSS - Follow-up 7 |
|
|
2024 (January) | 2024 (December) |
| 8 | SSCS - pSS - Follow-up 8 |
|
|
2025 (January) | 2025 (December) |
| 9 | SSCS - pSS - Follow-up 9 |
|
|
2026 (January) | 2026 (December) |
| 10 | SSCS - pSS - Follow-up 10 |
|
|
2027 (January) | 2027 (December) |
| 11 | SSCS - pSS - Follow-up 11 |
|
|
2028 (January) | 2028 (December) |
| 12 | SSCS - pSS - Follow-up 12 |
|
|
2029 (January) | 2029 (December) |
| 13 | SSCS - pSS - Follow-up 13 |
|
|
2030 (January) | 2030 (December) |
SSCS - Sarc
The population is composed of adult patients with biopsy-proven sarcoidosis from 8 different Swiss hospitals.
Selection Criteria
- Minimum age
-
18
- Countries
-
- Switzerland
- Territory
- Basel, Bern, Geneva, Vaud, Schaffhausen, St. Gallen, Valais, Zürich
- Health Status
-
- Diagnosed sarcoidosis
Sources of Recruitment
- Specific Population
-
- Clinic patients
Sample Size
- Number of Participants
- 35
- Number of Participants with Biological Samples
- 35
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | SSCS - Sarc - Baseline |
|
|
2017 (April) | 2030 (March) |
| 1 | SSCS - Sarc - Follow-up 1 |
|
|
2018 (April) | 2018 (December) |
| 2 | SSCS - Sarc - Follow-up 2 |
|
|
2019 (January) | 2019 (December) |
| 3 | SSCS - Sarc - Follow-up 3 |
|
|
2020 (January) | 2020 (December) |
| 4 | SSCS - Sarc - Follow-up 4 |
|
|
2021 (January) | 2021 (December) |
| 5 | SSCS - Sarc - Follow-up 5 |
|
|
2022 (January) | 2022 (December) |
| 6 | SSCS - Sarc - Follow-up 6 |
|
|
2023 (January) | 2023 (December) |
| 7 | SSCS - Sarc - Follow-up 7 |
|
|
2024 (January) | 2024 (December) |
| 8 | SSCS - Sarc - Follow-up 8 |
|
|
2025 (January) | 2025 (December) |
| 9 | SSCS - Sarc - Follow-up 9 |
|
|
2026 (January) | 2026 (December) |
| 10 | SSCS - Sarc - Follow-up 10 |
|
|
2027 (January) | 2027 (December) |
| 11 | SSCS - Sarc - Follow-up 11 |
|
|
2028 (January) | 2028 (December) |
| 12 | SSCS - Sarc - Follow-up 12 |
|
|
2029 (January) | 2029 (December) |
| 13 | SSCS - Sarc - Follow-up 13 |
|
|
2030 (January) | 2030 (December) |
Participating Studies
| Acronym | Name | Study design | Countries |
|---|
Harmonization Initiatives Included
| Acronym | Name |
|---|
Datasets
| Name | Data Collection Events | Variables |
|---|
Areas of Information Collected
- Socio-demographic and economic characteristics
- Death
- Lifestyle and behaviours
- Physical measures and assessments
- Birth, pregnancy and reproductive health history
- Laboratory measures
- Perception of health, quality of life, development and functional limitations
- Cognition, personality and psychological measures and assessments
- Diseases
- Life events, life plans, beliefs and values
- Symptoms and signs
- Preschool, school and work life
- Medication and supplements
- Social environment and relationships
- Non-pharmacological interventions
- Physical environment
- Health and community care services utilization
- Administrative information
Variables Content Summary
Areas of Information Collected
No Areas of Information Collected
No Scales Collected
Areas of Information Collected per per Population and Data Collection Event
No Areas of Information Collected
No Scales Collected
Networks
| Acronym | Name | Harmonization Initiatives | Individual Studies |
|---|
Last Update: 2024-12-16T09:10:09.796