Swiss Systemic Lupus Erythematosus Cohort Study
Networks
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Datasets
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Variables
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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.
- Start Year
- 2007
- End Year
- 2030
Visit SSCS
| Investigators | Contacts |
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Design
- Study design
- Cohort
- Follow Up
- After baseline, participants are followed-up once per year or in case of flares. Additional patient-reported outcomes take place twice yearly as planned.
Marker Paper
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 25115978
Recruitment
- Recruitment Target
-
- Individuals
Number of Participants
- 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 |
Timeline
Populations
The population is composed of adult patients with systemic lupus erythematosus from 8 different Swiss hospitals.
Selection Criteria
- Minimum age
-
18
- Newborns
- Twins
- Countries
-
- Switzerland
- Territory
- Basel, Bern, Geneva, Vaud, Schaffhausen, St. Gallen, Valais, Zürich
- Ethnic Origin
-
- Health Status
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- Diagnosed systemic lupus erythematosus
Recruitment
- Sources of recruitment
-
- Specific population
- Specific Population
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- Clinic patients
- Supplementary Information
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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.
Number of Participants
- Number of Participants
- 879
- Number of Participants with Biological Samples
- 879
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
SSCS - SLE - Baseline
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2007-04 | 2030-03 |
| 1 |
SSCS - SLE - Follow-up 1
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2008-01 | 2008-12 |
| 2 |
SSCS - SLE - Follow-up 2
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2009-01 | 2009-12 |
| 3 |
SSCS - SLE - Follow-up 3
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2010-01 | 2010-12 |
| 4 |
SSCS - SLE - Follow-up 4
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2011-01 | 2011-12 |
| 5 |
SSCS - SLE - Follow-up 5
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2012-01 | 2012-12 |
| 6 |
SSCS - SLE - Follow-up 6
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2013-01 | 2013-12 |
| 7 |
SSCS - SLE - Follow-up 7
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2014-01 | 2014-12 |
| 8 |
SSCS - SLE - Follow-up 8
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2015-01 | 2015-12 |
| 9 |
SSCS - SLE - Follow-up 9
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2016-01 | 2016-12 |
| 10 |
SSCS - SLE - Follow-up 10
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2017-01 | 2017-12 |
| 11 |
SSCS - SLE - Follow-up 11
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2018-01 | 2018-12 |
| 12 |
SSCS - SLE - Follow-up 12
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2019-01 | 2019-12 |
| 13 |
SSCS - SLE - Follow-up 13
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2020-01 | 2020-12 |
| 14 |
SSCS - SLE - Follow-up 14
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2021-01 | 2021-12 |
| 15 |
SSCS - SLE - Follow-up 15
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2022-01 | 2022-12 |
| 16 |
SSCS - SLE - Follow-up 16
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2023-01 | 2023-12 |
| 17 |
SSCS - SLE - Follow-up 17
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2024-01 | 2024-12 |
| 18 |
SSCS - SLE - Follow-up 18
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2025-01 | 2025-12 |
| 19 |
SSCS - SLE - Follow-up 19
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2026-01 | 2026-12 |
| 20 |
SSCS - SLE - Follow-up 20
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2027-01 | 2027-12 |
| 21 |
SSCS - SLE - Follow-up 21
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2028-01 | 2028-12 |
| 22 |
SSCS - SLE - Follow-up 22
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2029-01 | 2029-12 |
| 23 |
SSCS - SLE - Follow-up 23
|
Information about health data (demographics, disease characteristics, disease activity, treatment, lifestyle, treatment adherence), patient-reported outcomes (using SF-36, Fatigue Assessment ... | 2030-01 | 2030-12 |
The population is composed of adult healthy volunteers from 8 different Swiss cities.
Selection Criteria
- Minimum age
-
18
- Newborns
- Twins
- Countries
-
- Switzerland
- Territory
- Basel, Bern, Geneva, Vaud, Schaffhausen, St. Gallen, Valais, Zürich
- Ethnic Origin
-
- Health Status
-
- Absence of autoimmune disease or immunomodulatory treatment
- Other Criteria
- Exclusion criteria: Has fever or viral symptoms the week before blood sampling
Recruitment
- Sources of recruitment
-
- Specific population
- 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.
Number of Participants
- Number of Participants
- 64
- Number of Participants with Biological Samples
- 64
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
SSCS - HV - Baseline
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was or will be ... | 2017-04 | 2030-03 |
| 1 |
SSCS - HV - Follow-up 1
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was collected. ... | 2018-01 | 2018-12 |
| 2 |
SSCS - HV - Follow-up 2
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was collected. ... | 2019-01 | 2019-12 |
| 3 |
SSCS - HV - Follow-up 3
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was collected. ... | 2020-01 | 2020-12 |
| 4 |
SSCS - HV - Follow-up 4
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was collected. ... | 2021-01 | 2021-12 |
| 5 |
SSCS - HV - Follow-up 5
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was or will be ... | 2022-01 | 2022-12 |
| 6 |
SSCS - HV - Follow-up 6
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was or will be ... | 2023-01 | 2023-12 |
| 7 |
SSCS - HV - Follow-up 7
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was or will be ... | 2024-01 | 2024-12 |
| 8 |
SSCS - HV - Follow-up 8
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was or will be ... | 2025-01 | 2025-12 |
| 9 |
SSCS - HV - Follow-up 9
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was or will be ... | 2026-01 | 2026-12 |
| 10 |
SSCS - HV - Follow-up 10
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was or will be ... | 2027-01 | 2027-12 |
| 11 |
SSCS - HV - Follow-up 11
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was or will be ... | 2028-01 | 2028-12 |
| 12 |
SSCS - HV - Follow-up 12
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was or will be ... | 2029-01 | 2029-12 |
| 13 |
SSCS - HV - Follow-up 13
|
Information about health data (demographics, disease, lifestyle, treatment), patient-reported outcomes (using SF-36, Fatigue Assessment Scale), Physician's Global Assessment (PGA) was or will be ... | 2030-01 | 2030-12 |
The population is composed of adult patients with primary Sjoegren's syndrome from 8 different Swiss hospitals.
Selection Criteria
- Minimum age
-
18
- Newborns
- Twins
- Countries
-
- Switzerland
- Territory
- Basel, Bern, Geneva, Vaud, Schaffhausen, St. Gallen, Valais, Zürich
- Ethnic Origin
-
- Health Status
-
- Diagnosed Sjoegren's syndrome
Recruitment
- Sources of recruitment
-
- Specific population
- Specific Population
-
- Clinic patients
Number of Participants
- Number of Participants
- 32
- Number of Participants with Biological Samples
- 32
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
SSCS - pSS - Baseline
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2017-04 | 2030-03 |
| 1 |
SSCS - pSS - Follow-up 1
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2018-04 | 2018-12 |
| 2 |
SSCS - pSS - Follow-up 2
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2019-01 | 2019-12 |
| 3 |
SSCS - pSS - Follow-up 3
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2020-01 | 2020-12 |
| 4 |
SSCS - pSS - Follow-up 4
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2021-01 | 2021-12 |
| 5 |
SSCS - pSS - Follow-up 5
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2022-01 | 2022-12 |
| 6 |
SSCS - pSS - Follow-up 6
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2023-01 | 2023-12 |
| 7 |
SSCS - pSS - Follow-up 7
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2024-01 | 2024-12 |
| 8 |
SSCS - pSS - Follow-up 8
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2025-01 | 2025-12 |
| 9 |
SSCS - pSS - Follow-up 9
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2026-01 | 2026-12 |
| 10 |
SSCS - pSS - Follow-up 10
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2027-01 | 2027-12 |
| 11 |
SSCS - pSS - Follow-up 11
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2028-01 | 2028-12 |
| 12 |
SSCS - pSS - Follow-up 12
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2029-01 | 2029-12 |
| 13 |
SSCS - pSS - Follow-up 13
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity using the Physician's Global Assessment ... | 2030-01 | 2030-12 |
The population is composed of adult patients with biopsy-proven sarcoidosis from 8 different Swiss hospitals.
Selection Criteria
- Minimum age
-
18
- Newborns
- Twins
- Countries
-
- Switzerland
- Territory
- Basel, Bern, Geneva, Vaud, Schaffhausen, St. Gallen, Valais, Zürich
- Ethnic Origin
-
- Health Status
-
- Diagnosed sarcoidosis
Recruitment
- Sources of recruitment
-
- Specific population
- Specific Population
-
- Clinic patients
Number of Participants
- Number of Participants
- 35
- Number of Participants with Biological Samples
- 35
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
SSCS - Sarc - Baseline
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2017-04 | 2030-03 |
| 1 |
SSCS - Sarc - Follow-up 1
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2018-04 | 2018-12 |
| 2 |
SSCS - Sarc - Follow-up 2
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2019-01 | 2019-12 |
| 3 |
SSCS - Sarc - Follow-up 3
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2020-01 | 2020-12 |
| 4 |
SSCS - Sarc - Follow-up 4
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2021-01 | 2021-12 |
| 5 |
SSCS - Sarc - Follow-up 5
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2022-01 | 2022-12 |
| 6 |
SSCS - Sarc - Follow-up 6
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2023-01 | 2023-12 |
| 7 |
SSCS - Sarc - Follow-up 7
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2024-01 | 2024-12 |
| 8 |
SSCS - Sarc - Follow-up 8
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2025-01 | 2025-12 |
| 9 |
SSCS - Sarc - Follow-up 9
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2026-01 | 2026-12 |
| 10 |
SSCS - Sarc - Follow-up 10
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2027-01 | 2027-12 |
| 11 |
SSCS - Sarc - Follow-up 11
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2028-01 | 2028-12 |
| 12 |
SSCS - Sarc - Follow-up 12
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2029-01 | 2029-12 |
| 13 |
SSCS - Sarc - Follow-up 13
|
Information on patient’s age, sex, ethnicity, educational status, tobacco use, body mass index (BMI), disease duration since diagnosis, disease activity according to the Physician's Global ... | 2030-01 | 2030-12 |
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
Marital/partner status
Education
Ethnicity, race and religion
Labour force and retirement
Lifestyle and behaviours
Tobacco
Physical activity
Sleep
Birth, pregnancy and reproductive health history
Pregnancy, delivery and birth
Perception of health, quality of life, development and functional limitations
Quality of life
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)
Certain conditions originating in the perinatal period (P00-P96)
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)
General symptoms and signs (R50-R69)
Medication and supplements
Medication and supplement intake
Posology and protocol of administration
Non-pharmacological interventions
Surgical interventions
Other and unspecified non-pharmacological interventions
Health and community care services utilization
Hospitalizations
Other health and community care
Death
Vital status
Cause of death
Other end of life or death-related information
Physical measures and assessments
Anthropometry
Circulation and respiration
Laboratory measures
Hematology
Biochemistry
Immunology
Histology
Other laboratory measures
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
Fatigue Assessment Scale