IMMUNOLINES - REPSULT
REgistry of Pediatric Sjogren syndrome in Umcg-longitudinal...
Description
Longitudinal observational prospective cohort study combining up-to-date quality of care with gathering long-term prospective follow-up data in a unique cohort of pediatric Sjogren patients. Clinical and patient-reported parameters, salivary and tear...
General Design
- Type
- Biobank, Cohort study
- Cohort type
- Clinical cohort
- Data collection type
- Prospective
- Design
- Longitudinal
- Design description
- All patients with confirmed or suspected Sjogren syndrome before the age of 17 are considered for this study. Clinical and laboratory measurements will be gathered and patients wil be followed yearly for 10 years.
- Design schematic
- Design schematic
- Start/End data collection
- 2020 until 2030
- PID
- https://doi.org/10.34760/65266d745b896
- External identifiers
- METc number: 2019/541
Population
- Countries
- Netherlands (the)
- Regions
- Limburg, Zeeland, Zuid-Holland, Noord-Holland, Noord-Brabant, Flevoland, Utrecht, Gelderland, Overijssel, Drenthe, Friesland, Groningen
- Number of participants
- 100
- Number of participants with samples
- 100
- Population age groups
- All ages
- Main medical condition
- No main medical condition
- Other inclusion criteria
- o Confirmed or probable SS diagnosed before the age of 17 years. Confirmed or probable pedSS is defined by: - ACR/EULAR classification criteria for adult SS (Shiboski et al., 2017) OR - Positive SSA/Ro and/or SSB antibodies AND symptoms of glandular involvement according to the glandular domain of the European League Against Rheumatism (ESSDAI) OR ocular and/or oral symptoms according to the American-European Consensus Group (AECG) criteria OR - Autoimmune disease (SLE/Mixed Connective Tissue Disease or other systemic autoimmune diseases) AND symptoms of glandular involvement according to the glandular domain of the ESSDAI OR ocular and/or oral symptoms according to the AECG criteria OR - Recurrent parotitis not explained by recurrent infections - Diagnosis of pedSS based on the expert opinion of a (pediatric) rheumatologist o Written Informed consent signed by parents/legal caretaker and child (depending on age)
Organisations
Lead organisations
- University Medical Center Groningen (UMCG)Netherlands (the)https://www.umcg.nl/
Contributors
Subpopulations
List of subpopulations for this resource...
| Name | Description | Number of participants | |
|---|---|---|---|
No results for current selection |
Collection events
List of collection events defined for this resource...
| Name | Description | Participants | Start end year | |
|---|---|---|---|---|
No results for current selection |
Access conditions
- Data access conditions
- disease specific research
- Data use conditions
- no general methods research
- not for profit, non commercial use only
- collaboration required
- ethics approval required
- clinical care use
- Data access fee
- false
- Release type
- Periodically