SJIA disease burden caregiver research
Research type
Research Study
Full title
Caregiver Perspective on Disease Burden and Resource Utilization for SJIA Patients and Their Families (SJIA Disease Burden Caregiver Study)
IRAS ID
170068
Contact name
Nina Marinsek
Contact email
Sponsor organisation
Novartis Pharma
Duration of Study in the UK
0 years, 9 months, 9 days
Research summary
This a multi-national study with caregivers of children affected by systemic juvenile idiopathic arthritis (SJIA). SJIA and its treatment can impose a high burden on patients and their families. Although this burden is well described for JIA in general, a detailed analysis of the impact of SJIA and, particularly, severe SJIA is lacking.
Navigant are conducting this study on behalf of the pharmaceutical company Novartis in order to understand the impact that SJIA and its treatment have on the child with SJIA, their caregiver and their wider family.
130 caregivers will participate in the study across France, Germany, Netherlands, UK and US. Caregivers will be identified by recruiting clinicians and will be asked to complete an anonymized survey, which will take about 60 minutes. The survey includes questions about the caregiver, their family and their child suffering from SJIA in order to understand and measure the broad impact of SJIA.
The recruiting clinician will complete a brief medical history of the child with SJIA whom the caregiver looks after.
The results from the caregiver survey will be interpreted in light of the child's SJIA medical history to understand the impacts (physical, psychological and financial) of severe SJIA on patients and their families and their association with disease severity. This understanding will help physicians and healthcare providers design better treatment strategies for patients with severe SJIA.REC name
South West - Central Bristol Research Ethics Committee
REC reference
15/SW/0079
Date of REC Opinion
13 Apr 2015
REC opinion
Favourable Opinion