Video: Research into children’s rare diseases
The NIHR / Wellcome Trust Clinical Research Facility (CRF) at Royal Manchester Children’s Hospital conducts vital research, which can help develop new treatments for children with rare genetic diseases. This short video outlines why medical research is so important and the value of the CRF to both patients and staff.
Dr Simon Jones, Consultant in Paediatric Inherited Metabolic Disease, talks about ethical considerations when conducting research, including taking care of vulnerable patients, looking after families and ensuring they understand trial risks.
Elizabeth Worsley, Paediatric Nurse Manager, explains how the facility recruits patients with rare diseases from across the globe for clinical trials and how staff take care of accommodation and transport to ensure the experience is as stress-free and as comfortable as possible for patients and their families.
Emma Harrison, Healthcare Play Specialist, explains how her role helps young patients feel relaxed during the process of clinical studies. She is on hand as a friendly figure to play games and activities with youngsters, to ensure they are happy and at ease throughout their stay at the CRF.