Natural history of SCD - extension
Research type
Research Database
IRAS ID
366122
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
26/LO/0231
Date of REC Opinion
12 Mar 2026
REC opinion
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