Natural history of SCD
Research type
Research Database
IRAS ID
295169
Contact name
Kate Gardner
Contact email
Research summary
Natural history of sickle cell disease in adults - regional database
REC name
London - South East Research Ethics Committee
REC reference
21/LO/0204
Date of REC Opinion
22 Apr 2021
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Data to be stored will include full clinical history routinely collected in clinical care including:
- Demographic data: sex, DOB, sickle cell diagnosis, first half of postcode
- Clinical history: including diagnoses and medications
- Laboratory tests collected in routine clinical practice (both inpatient and outpatient) e.g. full blood count, renal function
- Imaging collected in routine clinical practice (both inpatient and outpatient) e.g. MRI scan results, echocardiogram results
- Quality of life metrics collected in routine clinical practice (outpatient) e.g. how sickle has affected fatigue, number of pain days, impact on social functioning.Data collection arrangements:
Initially, this is a five year study. The plan will be to collected data annually coinciding with the standard-of-care "annual review". This will include history taking and review of the electronic records to get details to add to the database. A combination of the sickle doctors and a study-specific trial coordinator will do this.Research programme
This is a natural history study looking at sickle cell disease, an inherited disorder of red cells.
Research database title
Natural history of sickle cell disease in adults - regional database
Establishment organisation
Guy's and St Thomas' NHS Foundation Trust
Establishment organisation address
Guy's Hospital
Great Maze Pond
London
SE19RT