LSD Outcomes Study
Research type
Research Database
IRAS ID
304955
Contact name
Derralynn Hughes
Contact email
Research summary
A retrospective observational study of clinical presentation and outcomes in Lysosomal Storage Disorders
REC name
East of England - Cambridgeshire and Hertfordshire Research Ethics Committee
REC reference
23/EE/0046
Date of REC Opinion
31 Mar 2023
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The data that is going to be collected is the medical data that is already stored on the electronic medical records. The database is only a way of collecting all the data in a way that makes analysing it feasible and easy.
Research programme
This database will allow us to carry out different research initiatives from the Lysosomal Storage Disorders Unit. It will allow to identify risk factors for complications, assess response to treatments and also address important questions such as where the clinical heterogeneity that is observed in patients with lysosomal storage disorders come from.
Research database title
A retrospective observational study of clinical presentation and outcomes in Lysosomal Storage Disorders
Establishment organisation
Royal Free Hospital NHS Foundation Trust
Establishment organisation address
Pond Street
NW3 2QG