HANDSOME Experience v1.0
Research type
Research Study
Full title
Exploring hand function impairments in systemic sclerosis: HANDSOME-experience study
IRAS ID
330634
Contact name
Voon Ong
Contact email
Sponsor organisation
University Medical Center Utrecht
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Systemic sclerosis (SSc) is a rare autoimmune disease with high morbidity and mortality. It is characterised by inflammation and fibrosis of the skin and internal organ involvement. In a recent survey, more than a quarter of SSc patients prioritised reduced hand function as an unmet need with regard to health care. However, this unmet need has not been studied into detail and little is known about the extent and impact of hand function impairment experienced by SSc patients in daily life.
We aim to gain insight into the extent of hand function impairment experienced by SSc patients and its impact on daily functioning, participation in society and quality of life. Furthermore, we aim to explore the unmet needs with regard to education and (non)-pharmacological treatments. Additionally, we will measure quantitatively hand mobility and skin fibrosis with validated tests.
Participation includes completion a questionnaire and participation in one face-to-face interview. The questionnaire will take approximately 10 minutes. The interview followed by hand mobility measurement and skin assessment will take 45-60 minutes. The interview will be done preferably combined with a routine hospital visit which limits traveling time and effort. There are no risks associated with participation in this study.
REC name
East Midlands - Nottingham 2 Research Ethics Committee
REC reference
23/EM/0288
Date of REC Opinion
21 Dec 2023
REC opinion
Favourable Opinion