CARES Research

Sickle cell disease (SCD) is one of the most common genetic diseases in the UK affecting approximately 17,500 individuals and almost 300 babies born annually.

SCD is associated with recurrent episodes of acute pain and complications and may impact children’s school participation and academic attainment. However, there is limited data on SCD children’s health and educational outcomes at a national level.

Furthermore, SCD predominantly presents in people of sub-Saharan African, Caribbean, Middle Eastern, or Eastern Mediterranean descent and patients too often face sub-standard health care and negative attitudes. Children with SCD are underrepresented in research and an updated perspective regarding healthcare utilisation and management strategies is needed.

This study aims to address these issues by using three large databases, the National Haemoglobinopathy Registry (NHR), Hospital Episode Statistics (HES), and Education and Child Health Insights from Linked Data (ECHILD), to compare SCD children’s health outcomes, healthcare utilisation, and educational outcomes with two control groups.

Why is this study needed?

SCD is associated with recurrent episodes of acute pain and complications, such as stroke and progressive organ damage, leading to frequent hospitalisations. Children’s school participation and academic attainment may be impacted by SCD-related pain, fatigue, and neurological complications.

SCD presents predominantly in people of sub-Saharan African, Caribbean, Middle Eastern, or Eastern Mediterranean descent. SCD patients too often face substandard care and negative attitudes due to stereotyping, structural racism, and inadequate awareness of SCD in the NHS.

Children with SCD are underrepresented in research. A comprehensive review of health consequences of SCD from early childhood to adulthood in England is lacking and there is limited data on health and educational outcomes at a national level. Furthermore, an updated perspective on healthcare utilisation and improved management strategies for general and specialist care for children with SCD is needed.

Therefore, high-quality research is needed to provide insight into the health outcomes, healthcare utilisation, and educational outcomes of children with SCD at a national level.

HOW WE WILL ACHIEVE THIS

This study aims to link and analyse three large databases, the National Haemoglobinopathy Registry (NHR), Hospital Episode Statistics (HES), and Education and Child Health Insights from Linked Data (ECHILD).

SCD children will be compared with two control groups, a cohort of children unaffected by SCD and an asymptomatic cohort of children with sickle cell trait (SCT) (those who inherit one sickle and one normal haemoglobin gene).

The SCD and control cohort’s health outcomes, healthcare utilisation and educational outcomes will be compared to provide essential insight into the lived experience of children with SCD in England.

Join the focus group

About Us

Professor Alastair G Sutcliffe MD PhD FRCP FRCPCH FRCOG PG Dip CT

Professor of General Paediatrics

Professor (Dr) Alastair Sutcliffe initiated his first studies of children with one regarding children born after embryo-cryopreservation in 1993-1994. His work started where Louise Brown was born, St Mary’s Hospital Manchester and was cited in Hansard. This was the start of a long journey and many more studies in that field (with over 100 scientific papers {out of a total of 240} and several books). He is regarded as one of the most experts worldwide regarding the health of IVF children but is also a children’s Doctor (see www.londonpaediatrician.com). He and his team are currently studying adults who are subfertile as well as their children. His contribution to women’s health has been recognised last year by being made FRCOG (ad eundem.) His present work is funded by Wellcome Foundation, Nuffield Foundation, NHMRC, NIHR and the NIH ( Bethesda Maryland) as well as the GOSH/ICH BBRC.

Read more + Collapse -

Yan Lu
BSc MSc PhD

Statistician

I completed my PhD in Statistics and am interested in applying statistical and machine learning methods to epidemiology and health outcomes research. My
specific research interests include statistical designs of observational studies and analytical methods for cross-sectional and longitudinal data from large cohorts.

Read more + Collapse -

Kate Green
BA MSc

Research Assistant

Kate completed her MSc in Child and Adolescent Mental Health. Her dissertation focused on the mental health, sleep, and neurodiverse outcomes of children with Hypoxic Ischemic Encephalopathy.

Read more + Collapse -

Faiza Afzal B.Sc. PhD. PG Dip CT

Senior Research Fellow

Faiza completed her Ph.D. in Bone Physiology and her postdoctoral research in cell and molecular biology and gene therapy of cardiovascular disease. Her research interests include women’s reproductive health and birth outcomes. She also has experience in project management and has recently completed a Diploma in Clinical trial Management.

Read more + Collapse -

Daniel Armstrong, Ph.D

Professor of Pediatrics and Psychology

Director, Mailman Center for Child Development. Special Senior Advisor to the Chair of Pediatrics University of Miami

Over the past 39 years Dr. Armstrong has served in multiple senior clinical, research, educational, and administrative leadership roles for the UM Miller School of Medicine and Jackson Health System, and served for 18 months as the interim director of the Division of Pediatric Pulmonary Medicine. He was the founding director of the UM Masters in Clinical and Translational Investigation program. Dr. Armstrong’s research involves acute and long-term neurodevelopmental outcomes of treatment of childhood cancer, sickle cell disease, and HIV/AIDS, understanding the mechanisms associated with these outcomes, and conducting clinical trials of interventions (behavioural, biological, and pharmacological) in children with neurodevelopmental disabilities and chronic illnesses. Dr. Armstrong has led on a number of NIH multi-centre clinical research trials, is Chair of the Psychology and Behavioural Sciences Committee for both the Pediatric Oncology Group and Children’s Oncology Group, is Chair of the NHLBI Sickle Cell Advisory Committee, and consultant to multiple federal agencies, including NIH, the FDA, HRSA/MCHB, IOM/NAS, and the Executive Office of the White House. Dr. Armstrong was the 2023 recipient of the Greater Miami Chamber of Commerce Healthcare Heroes Lifetime Achievement Award.

Read more + Collapse -

Funmi V Ullam

Founder, Crescent Kids

Funmi V Ullam is a passionate mother of two boys, one of whom was diagnosed with Sickle Cell at two weeks old. For the past 13 years, she has navigated the NHS system as a dedicated advocate for her child.

She is the co founder of Crescent Kids—a non-profit organisation supporting children in the UK & Nigeria with Sickle Cell and has worked with the NHS, Global Blood Therapeutics, Fit Bit & Apple Health. Funmi has many years experience working in the Tech industry and is currently employed as the Regional Sales Director for Healthcare for a global technology company.

Recently, she was selected for the NHS England Entrepreneur Program, Patient Cohort, recognising her relentless efforts to innovate and improve the quality of life for children and families managing Sickle Cell.

Read more + Collapse -

Samah Babika

Consultant Paediatric Haematologist, at the Evelina London Children’s hospital, Guys and St Thomas NHS Foundation trust.

Clinical lead for paediatric haemoglobinopathy. Predominantly interested in non-malignant haematology particularly red cell disorders such as sickle cell anaemia, thalassaemia and others, as well as immune haematology.
Passionate about clinical research in all areas relating to sickle cell disease.

Read more + Collapse -

Children’s Academic and Health REsults for Sickle Cell Disease in England (CARES)

Sickle cell disease (SCD) is one of the most common genetic diseases in the UK affecting approximately 17,500 individuals and almost 300 babies born annually.

Why is this study needed?

HOW WE WILL ACHIEVE THIS

This study aims to link and analyse three large databases, the National Haemoglobinopathy Registry (NHR), Hospital Episode Statistics (HES), and Education and Child Health Insights from Linked Data (ECHILD).

Join the focus group