Long term outcome of childhood onset SLE in the Netherlands

Long term outcome of childhood onset SLE in the Netherlands - CHILL-NL-C

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON40485

Enrollment

150

Registered

2013-08-15

Start date

2013-12-12

Completion date

Unknown

Last updated

2024-04-29

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Childhood lupus Juvenile Systemic Lupus Erythematosus Paediatric Systemic Lupus Erythematosus

Interventions

None listed

Eligibility

Age

18 Years to 99 Years

Inclusion criteria

Inclusion criteria: Patients diagnosed with SLE according to the ACR-criteria. Onset of symptoms before the age of 18 (for patients) Onset of symptoms after the age of 18 (for disease-controls) Patient is currently older than 18 years Consent to review medical records Signed informed consent Sufficient knowledge of the Dutch language to participate

Exclusion criteria

Exclusion criteria: Refusal to participate Insufficient knowledge of the Dutch language

Design outcomes

Primary

Measure	Time frame
The primary endpoints are the long term damage measured with the SDI and the quality of life measured with the SF-36. Work participation, coping styles, family planning and fertility, fatigue and psychosocial functioning will also be assessed, as these factors influence quality of life.	—

Secondary

Measure	Time frame
Secondary endpoints are demographic parameters, socio-economic status, disease characteristics at diagnosis, comorbidities, social support, physical activity and productivity costs.	—

Countries

Netherlands

Outcome results