The Scleroderma Patient Centered Intervention Network (SPIN) Cohort
Research type
Research Study
Full title
The Scleroderma Patient Centered Intervention Network (SPIN) Cohort
IRAS ID
152338
Contact name
Christopher Denton
Contact email
Sponsor organisation
Lady Davis Institute of Medical Research
Research summary
SPIN is an international collaboration of patient organizations, clinicians, and researchers, whose long-term goal is to develop an infrastructure that can be used on an ongoing basis to test accessible, low-cost interventions to reduce disability and improve the health-related quality of life (HRQL) of people living with the rare and chronic disease systemic sclerosis (SSc), which is also known as scleroderma.As a first step, we are seeking approval for the establishment of the SPIN Cohort. The SPIN Cohort will involve recruiting people living with SSc to complete periodic online assessments via measures that assess outcomes important to people with SSc. This will allow us to track key psychosocial variables among a large number of people with SSc longitudinally, which will be useful for better understanding problems identified by patients as important to them, determining the best way to measure outcomes related to these problems, and to plan for interventions to address these problems. Eventually, the SPIN Cohort will be used as an investigative infrastructure to conduct pragmatic randomized controlled trials (RCTs) that test the effectiveness of psychosocial and rehabilitation interventions, which will be developed by SPIN. In these trials, novel interventions will be compared to treatment as usual. The present proposal is requesting ethics approval for the establishment of the SPIN Cohort only. In the future, when SPIN intervention trials are developed and being prepared for testing, separate ethics proposals will be submitted for each pragmatic randomized controlled trial.
REC name
London - Hampstead Research Ethics Committee
REC reference
14/LO/1454
Date of REC Opinion
24 Oct 2014
REC opinion
Further Information Favourable Opinion