East London Sickle Cell Disease Neonatal Cohort
Research type
Research Study
Full title
Long-term follow-up of the East London Sickle Cell Disease Neonatal Cohort
IRAS ID
217010
Contact name
PAUL Telfer
Contact email
Sponsor organisation
Barts Health NHS Trust
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Sickle Cell Disease is the commonest genetic condition in England, affecting predominantly black African and Caribbean subjects. Although a single gene disorder, the condition is variable in severity and results in a panoply of acute and chronic complications, reduced life expectancy, poor quality of life and large demands on health care services. The disease is not well understood particularly with regard to long-term natural history and definition of risk factors which might help in guiding therapy. The E London Newborn cohort is a unique cohort of patients diagnosed with universal newborn screening in the London Boroughs of Hackney since 1983. The cohort is under continuous clinical follow up at The Royal London Hospital, although a minority have transferred care to other clinics or become lost to follow-up. The first report on the cohort was published in 2007. After a further decade of follow-up, an analysis of outcomes and risk factors will provide important data to inform health service planning and treatment decisions for SCD in the UK and elsewhere. The current study will require collecting and validating clinical, laboratory and radiological data on all cohort patients, and undertaking a number of statistical analyses on the dataset. Data on patients under current follow-up at RLH is maintained on a secure clinical database at RLH. Information on patients in other clinics will need to be sought from their GP or specialist. Attempts will be made to trace those lost to follow-up. In order to avoid bias and to enable an accurate assessment of overall outcomes, we wish to use non-consented patient data and will be applying to REC and the Confidentiality Advisory Group
REC name
London - Bloomsbury Research Ethics Committee
REC reference
17/LO/0281
Date of REC Opinion
8 Mar 2017
REC opinion
Favourable Opinion