SAIL
Research type
Research Database
IRAS ID
344606
Contact name
Anindita Roy
Contact email
Research summary
SAIL Research Database
REC name
East Midlands - Derby Research Ethics Committee
REC reference
25/EM/0002
Date of REC Opinion
16 Jan 2025
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Parents or legal guardians of infants aged 365 days or less with a confirmed diagnosis of acute lymphoblastic leukaemia (ALL) can participate in the SAIL Database.
Data for the SAIL Database is sourced from four key areas:
1. Parent Reported Outcomes: Data is collected prospectively from parents throughout treatment, including adverse events, behavioural factors (eating, sleeping), and environmental factors.
2. Clinical/Outcome Data from NHS Datasets: Long term data is obtained from NHS records, including demographics, diagnostics, treatment details, toxicity, and clinical outcomes. Access is managed by research staff or PhD students with NHS contracts.
3. Research Datasets: Data from patient samples, stored with consent at the National VIVO Biobank or local cell banks, is included. No new sample collection required.
4. Multimodal Sample Analyses: Data from analyses of samples collected during routine NHS care or stored in the National VIVO Cell Bank is linked to the SAIL database. Ethical approval has been secured for sample use from multiple hospitals.
Parents provide identifiable data (name, ethnicity, family cancer history, sex, postcode, email) to link external data and samples to the infant. The SAIL team is responsible for maintaining participant consent throughout the study.Research programme
Acute lymphoblastic leukemia (ALL) is the most common cancer in children. Despite treatment advances, some forms, especially infant ALL (iALL), remain difficult to treat with poor outcomes. Currently, the UK has no ongoing clinical trials for infants with ALL. To address this, the UK NCRI Leukemia sub-group created the UK Infant ALL Guideline 2021. This new treatment guideline uses immunotherapy instead of some of the most intense and toxic chemotherapy previously used. It also aims to personalise treatment based on specific biological features of each patient’s leukaemia. These guidelines aim to gather comprehensive clinical data and parent-reported experiences to improve understanding and treatment of iALL. SAIL plans to meet scientific and clinical needs of iALL through innovative and collaborative methods. Researchers are generating complex datasets, including single-cell RNA sequencing, genomics, and flow cytometry, to understand iALL's vulnerabilities. Collating these datasets, combined with real-world clinical data, may help predict outcomes and design personalised treatment plans. SAIL's long-term goal is to create a high-quality, interactive, national database for ongoing and future iALL research. Data from the SAIL Database will be made available to research groups following submission of a project application, subject to review and approval by the SAIL Management Group.
Research database title
SAIL Research Database
Establishment organisation
CRUK Oxford Centre - University of Oxford
Establishment organisation address
Churchill Hospital
Headington, Oxford
OX3 7LE