ong term outcome of childhood onset SLE in the Netherlands

Recruiting

• Conditions: Childhood lupus; Juvenile Systemic Lupus Erythematosus; Paediatric Systemic Lupus Erythematosus; 10003816

• Registration Number: NL-OMON40485
• Lead Sponsor: Erasmus MC, Universitair Medisch Centrum Rotterdam

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Last Update Posted: 29 April 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: Not specified
• Target Recruitment: 150

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

Refusal to participate
Insufficient knowledge of the Dutch language

Study & Design

• Study Type: Observational invasive
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
<p>The primary endpoints are the long term damage measured with the SDI and the<br /><br>quality of life measured with the SF-36. Work participation, coping styles,<br /><br>family planning and fertility, fatigue and psychosocial functioning will also<br /><br>be assessed, as these factors influence quality of life. </p><br>

Secondary Outcome Measures

Name	Time	Method
<p> Secondary endpoints are demographic parameters, socio-economic status, disease<br /><br>characteristics at diagnosis, comorbidities, social support, physical activity<br /><br>and productivity costs. </p><br>