Adult survivors of sickle cell disease, transfusion-dependent beta-thalassaemia and childhood acute leukaemia in England: protocol for a mixed methods data linkage and health-related quality of life survey study

The study has received ethical and information governance approval from the Health Research Authority (Reference 24/YH/0186) and the Confidentiality Advisory Group (CAG 24/CAG/0138) to process identifiable data without consent. Study results will be available to patients, physicians, researchers, stakeholders and others through open-access publishing, results sharing via media platforms and presentations at conferences and meetings.

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Publication Details

Journal
BMJ Open
Published
2026-02-01
DOI
https://doi.org/10.1136/bmjopen-2025-111664
Primary Topic
Data Quality and Management
Type
article
Field-Weighted Citation Impact
0.00
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article

Adult survivors of sickle cell disease, transfusion-dependent beta-thalassaemia and childhood acute leukaemia in England: protocol for a mixed methods data linkage and health-related quality of life survey study

Thuvia Flannery, Joseph Sharif, Samantha J. Mason, Clare Samuelson et al.
BMJ Open
Data Quality and Management
article

Adult survivors of sickle cell disease, transfusion-dependent beta-thalassaemia and childhood acute leukaemia in England: protocol for a mixed methods data linkage and health-related quality of life survey study

Thuvia Flannery, Joseph Sharif, Samantha J. Mason, Clare Samuelson, Quentin A. Hill, Nandini Sadasivam, Kamran A. Ahmed, Emma Astwood, Brigit Greystoke, Richard Feltbower, Adam Glaser, Beki James, Georgios Gkountouras, Diana Greenfield, Adam Martin, Kate Absolom, John A. Snowden, Michelle Kwok- Williams, Ivana Holloway, David Simcox, Michael Richards, Ruben Mujica-Mota, Sam Ackroyd, Robert D Murray
article en

Abstract

The study has received ethical and information governance approval from the Health Research Authority (Reference 24/YH/0186) and the Confidentiality Advisory Group (CAG 24/CAG/0138) to process identifiable data without consent. Study results will be available to patients, physicians, researchers, stakeholders and others through open-access publishing, results sharing via media platforms and presentations at conferences and meetings.

BMJ OpenVol. 16(2)
University of Leeds (GB), University of Liverpool (GB), Leeds Teaching Hospitals NHS Trust (GB), Royal Victoria Infirmary (GB), Royal Liverpool University Hospital (GB), Manchester University NHS Foundation Trust (GB), Sheffield Teaching Hospitals NHS Foundation Trust (GB), Sheffield Children's NHS Foundation Trust (GB), Sheffield Children's Hospital (GB), Bradford Teaching Hospitals NHS Foundation Trust (GB), University of Sheffield (GB)
Openalex Percentile: Top 73%
Data Quality and Management
DOIOpen Access PDFOpenAlex
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