Introduction: Hand data collection in Epidermolysis Bullosa (EB) is intermittent, particularly after surgery, and accurate measurement of range of movement is compromised by use of dressings and contractures. Current hand therapy outcome measures are also not specific enough for those with EB. As a result, we are unable to chart disease progression, responses to treatment care and costs and evidence best practice. A Hand Therapy-online (HTO) system was developed and validated. It comprises an electronic hand therapy patient record with patient-recorded outcome measures and automated data analysis, including a total hand score. Objectives • To register a service evaluation of the HTO system within an Information Technology (IT) governance framework in our Hand Therapy Department • To set up the HTO system and train participants in data collection and analysis • To collect routine hand therapy data with patients, in parallel with current Electronic Patient Records (EPR), over 12 months • To evaluate the acceptability of the HTO system with clinicians, patients and carers • To determine the consistency and quality of data recording on the HTO system compared with EPR data Materials & Methods: The National Institute of Health Research Telehealth Implementation Toolkit framed the evaluation. Twenty English speaking patients with EB, undergoing hand therapy intervention, and their carers were invited to participate (February to November 2019). Minimum data capture to the HTO system was clinically determined by hand therapists and patients, with reciprocal monitoring by the therapists. Participants assessed, monitored and recorded their own outcomes on the HTO system over 10 months. The system was refined to meet service requirements. Results: Sixteen participants were recruited with two exclusions (English not first language). Fifteen baseline assessments were conducted with one IT failure preventing completion. Four participants were unable to complete their assessments remotely, and their data were collected in clinic. Of the remaining 12 participants, seven used the HTO system remotely, including two receiving post-surgical hand release. Conclusions: The HTO system facilitates shared patient and clinician records, with remote capture of objective hand data and contemporaneous qualitative accounts that have previously not been collected. It is quick and easy to complete and allows monitoring of patients’ hand condition between clinic appointments. All the data are captured in one place, charting disease progression, response to treatment care and costs. The system relies on patient and clinician participation in data capture. The rewards include improved communication and understanding of how individual’s situations impact upon hand therapy.