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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Ms
Rachel
Ochiel
rachel.ochiel@nhs.net
Dr
Christopher
Denton
c.denton@ucl.ac.uk
Kimberley
Morlese
kimberley.morlese@nhs.net
Systemic connective tissue disorders
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
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.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Cohort study;
You can take part if:
You may not be able to take part if:
1.Not fluent in English 2.Any disorder that compromises ability to give informed consent for participation in the SPIN Cohort. 3.No access to or not able to respond to questionnaires via the Internet.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Kimberley
Morlese
kimberley.morlese@nhs.net
Ms
Rachel
Ochiel
rachel.ochiel@nhs.net
Dr
Christopher
Denton
c.denton@ucl.ac.uk
The study is sponsored by ROYAL FREE LONDON NHS FOUNDATION TRUST and funded by Canadian Institutes of Health Research .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 17507
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
