Lysosomal Disorders: Covid-19 Impact Short Survey
Research type
Research Study
Full title
Lysosomal Disorders: Covid-19 impact - Home infusions and patient Wellbeing: A patient-survey
IRAS ID
300581
Contact name
Lucy Parker
Contact email
Sponsor organisation
Royal Free London NHS Foundation Trust
Duration of Study in the UK
0 years, 6 months, 31 days
Research summary
This study is looking to assess the impact of Covid 19 and home care treatment interruption in patients with lysosomal disorders (LSD). This survey would provide a snap shot of what matters most to our patients and would pave the way to improved psychology and other allied health support as required There is currently no bench mark or existing studies that have evaluated the impact of Covid 19 and health and wellbeing in LSD patients in the UK.
This short survey will also allow us to understand the impact of shielding and its effect on the wellbeing of our patients. Treatment interruptions during the lockdown and what mattered most to patients will. be identified. There is also limited information whether Covid-19 infection impacts significantly on our patients and if having a chronic illness increased the susceptibility of Covid-19 infections in our patients.REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
21/EE/0147
Date of REC Opinion
8 Jun 2021
REC opinion
Favourable Opinion