Comprehensive Care in Systemic Sclerosis: The Leiden CCISS cohort

The Leiden CCISS cohort is one of the largest prospective SSc cohort studies in The Netherlands. All patients with confirmed diagnosis of SSc/ CTD undergo annual standardized medical assessment of organ involvement. In addition, data on health related quality of life and patient reported outcome measures are collected. The longitudinal character of the cohort allows for assessment of disease course and disease burden over time.

Specifically,

• by systematic evaluation over time in the SSc population we aim to improve clinical patient classification and identify biomarkers that can improve patient prognostication.
• by scientific evaluation of the outcomes of multidisciplinary team care we aim to stratify health care in line with the needs of the individual patient

One of our projects that aims to improve health care investigates the optimal frequency for medical evaluation of patients with SSc.

First, we systematically evaluated disease progression in our patients and show that 52% of patients experiences any form of organ progression over time (median follow-up 4 years). On the other hand, 48% of patients did not show any sign of progression.

Next we applied machine learning and developed a prediction model that can identify the patients with low risk for disease progression. Currently, we are applying this model in a randomized controlled trial (PRASSc; link naar trialregister) in which SSc patients with predicted low risk for disease progression are randomized to lower frequency of medical assessment