The Yorkshire Register was established in the 1980’s by Professor Tricia McKinney, this was in collaboration with local clinicians in Leeds and supported by the Candlelighters Trust. The Register’s purpose is to provide key research information on disease patterns across the region.
In 2008, Professor Richard Feltbower became Director of the Yorkshire Register research database, with Professor Adam Glaser joining as Co-investigator and Medical Director in 2018.
The Register has now evolved into one of the world’s most comprehensive collections of cancer registration data, supporting research into long-term health and social outcomes. A unique feature of the database has been the ability to link cancer registration information to other health, and social care data, such as hospital admissions and educational attainment to provide valuable insights into the lives of young cancer survivors after their cancer diagnosis.
Staff currently working on the YSRCCYP are:
Professor Richard Feltbower
Professor of Epidemiology, University of Leeds.
Director, Yorkshire Specialist Register of Cancer in Children and Young People
Co-Principle Investigator, Paediatric Intensive Care Audit Network (PICANet)
Deputy Director, Child Health Outcomes Research at Leeds (CHORAL)
Email | YSRCCYP | PICANet | CHORAL | X | ORCID
Prof. Richard Feltbower is Professor of Epidemiology and the research programme lead for the Yorkshire Register. Richard trained in Mathematics and Medical Statistics at the University of Nottingham and University of Leicester between 1993-1997. He joined the Register research team in 1998 as a Research Statistician under the leadership of Prof Patricia McKinney. He took over from Tricia in 2008 and is now supported by Prof Adam Glaser as the Medical Director of the registry.
Richard has a successful track record leading cancer outcomes research among children and young people using linked registry and hospital admissions data. He is also the current Chair of the CCLG Epidemiology and Registry Group, sits on the National Cancer Registry and Analysis Service (NCRAS) Expert Advisory Group for Children, Teenagers and Young Adults, and is a member of the NCRI Teenage and Young Adult Clinical Studies Group. He is also a member of the national Coronavirus paediatric cancer monitoring programme.
Richard is also the Deputy Director of CHORAL (Child Health Outcomes Research at Leeds), which is a £5 million research programme dedicated to researching how to improve the outcomes for children with severe childhood illnesses, life threatening diseases and mental health conditions.
Professor Adam Glaser
Professor of Oncology and Late Effects Medicine, University of Leeds.
Consultant Paediatric Oncologist, Leeds Teaching Hospitals NHS Trust
Medical Director, Yorkshire Specialist Register of Cancer in Children and Young People
Director, Child Health Outcomes Research at Leeds (CHORAL)
Email | YSRCCYP | CHORAL | X | ORCID
Prof. Adam Glaser has 25 years experience as an NHS consultant specialising in paediatric oncology & the late effects of cancer. He served as Clinical Director of the National Cancer Survivor Initiative at the Department of Health (2010-13) and national clinical lead for cancer at NHS Improvement (2010-13). During this time, he established the National Cancer PROMS programme and realised there was a lack of robust intelligence on the late effects of survival from cancer to allow for robust commissioning and delivery of appropriate aftercare services. Consequently, he has developed a successful research programme to gather intelligence on the quality of survival of people living with and beyond a diagnosis of cancer. He is currently Principal Investigator, or co-Principal Investigator, on in excess of £5 million of grants.
Adam is Research Lead at Leeds Children’s Hospital (research income exceeds £1million per annum with over 100 open clinical studies) and Medical Director of the Yorkshire Specialist Register of Children and Young People with Cancer. He has published extensively on the late effects of cancer with over 50 peer reviewed publications in the last 5 years.
Adam is the Director of CHORAL (Child Health Outcomes Research at Leeds), which is a £5 million research programme dedicated to researching how to improve the outcomes for children with severe childhood illnesses, life threatening diseases and mental health conditions.
Rebecca Christiansen
Data Collection & Clinical Coding Coordinator
Becky is a data manager and clinical coder, with a background in Biomedical Science (BSc). Joining the register team in late 2023, she has vast experience in managing various forms of clinical data, with a strong focus on clinical trials and oncology.
Prior to working at the University of Leeds, Becky worked as a data manager for Peter MacCallum Cancer Centre’s Centre of Biostatistics and Clinical Trials (BaCT) in Melbourne Australia. In her current role, Becky’s work centres around coordinating the collection and management of data for the register from sites across Yorkshire & the Humber. Additionally, she has been actively involved in updating and standardising information governance procedures within the YSRCCYP and aiding in the transition of the database to a new trusted research environment (TRE).
Kirsten Cromie
Research Statistician / Epidemiologist, University of Leeds
Doctoral Candidate, University of Leeds
Email | YSRCCYP | TWITTER | LinkedIn | ORCID
Kirsten joined the Register team as a Research Statistician in 2020. Kirsten has a background in medical statistics and epidemiology. Prior to joining the University in 2019, Kirsten graduated with a first-class degree in Biological Sciences (BSc) from The University of Liverpool before obtaining a Master of Research in Epidemiology (Newcastle University).
Kirsten has demonstrated experience in the practical application of advanced statistical methods for quantitative health research. She has worked previously with large, complex datasets such as the Born in Bradford and Thousand Families birth cohort studies, linked to electronic healthcare data to facilitate population-based research. In her role as Register Statistician, Kirsten has a particular interest in health inequalities and long-term morbidity following a diagnosis of cancer in the childhood or young adult age range. In 2020, Kirsten was awarded the University of Leeds ‘Emma and Leslie Reid Research Scholarship’ to fund an ongoing body of PhD research using novel statistical methodologies to investigate the risk and development of cardiovascular and metabolic diseases in the YSRCCYP cohort.
Dr Tatendashe (Bernadette) Dondo
Senior Research Statistician, University of Leeds
Email | YSRCCYP | CHORAL | Google Scholar | LinkedIn
Areas of expertise: I have wide-ranging expertise in analytical techniques such as univariate tests, statistical modelling, multilevel modelling, latent growth modelling, flexible parametric survival modelling, mediation analysis, instrumental variable analysis, propensity scoring, multiple imputations, structural equation modelling, longitudinal data analysis and latent class analysis.
Profile: I joined the University of Leeds in 2013 doing my masters in Epidemiology and Biostatistics. On completion I joined the Cardiovascular Epidemiology group working as a research assistant in 2014, alongside which I completed a PhD in Cardiovascular Epidemiology and Biostatistics. In 2018 I was promoted to Postdoctoral Medical Statistician. Currently, I am working as a Senior Research Statistician/Epidemiologist as part of the Child Health Outcomes Research at Leeds team.
Research interests: Electronic Health Record Data, Epidemiology and Biostatistics.
My research interests are in the use of population-based data with advanced statistical methodologies to conduct high impact research that is able to improve patients’ care and outcomes, working in collaboration with clinicians, life scientists and other health professionals. Datasets I have used include: Myocardial Infarction National Audit Project registry (~n= 900,000 participants), UK Women’s cohort study (n=32,000 participants) and linked Evaluation of the Methods and Management of Acute Coronary Events (~ n=10,000 participants)-Hospital Episodes Statistics. I have been involved in teaching undergraduate, postgraduate medical and allied healthcare professional (Radiographers, Audiology, Cardiac Physiology students) students at the University of Leeds.
Qualifications:
PhD in Cardiovascular Epidemiology and Biostatistics, University of Leeds
MSc in Epidemiology and Biostatistics, University of Leeds
BSc in Nutrition, University of Zimbabwe
Dr Nicola Hughes
Medical Oncology Registrar, Leeds Teaching Hospitals NHS Trust
NIHR Clinical Lecturer in TYA and Sarcoma Cancer Care, Leeds Institute of Medical Research
Nicola joined the team in 2018 and in 2020 was awarded an NIHR doctoral research fellowship to investigate the impact of dose intensity of chemotherapy on survival outcomes in teenagers and young adults with cancer. This work utilised the Systemic Anti-Cancer Therapy dataset held by Public Health England along with clinical trials data and data from the electronic chemotherapy prescribing system ChemoCare. Following completion of her PhD she was successful in obtaining an NIHR funded Clinical Lectureship with a focus on TYA and Sarcoma Cancer Care. She splits her time between working clinically at the Leeds Cancer Centre and academically in the YSRCCYP. Her current research projects focus on the use of existing healthcare data to investigate the toxicity of chemotherapy in TYA.
Rebecca Mottram
NIHR Fellow, University of Leeds
Senior Research Nurse, Leeds Teaching Hospitals NHS Trust
Rebecca is a Senior Research Nurse at LTHT and NIHR Doctoral fellow at the University of Leeds. She has a background in paediatric nursing and research. Rebecca works as part of the YSRCCYP team to lead the development of the UK registry of people with stored ovarian and testicular tissue (UKSTORE). Her NIHR Fellowship is part of a doctoral project looking at patient-centred reproductive survivorship care for young adult cancer survivors who have stored fertility tissue. You can find out more about UKSTORE via https://ukfertilityregister.org.uk
Lee Norman
Developer / Analyst / Information Governance Manager, University of Leeds
YSRCCYP | PICANet | Strong-AYA | CHORAL | ORCID | ResearchGate | LinkedIn | X
Lee is a software developer, analyst and information governance professional who has been working at the University of Leeds since 2008. Originally started working on the Yorkshire Register of Diabetes in Children and Young People, Lee now works across a diverse set of research projects centred around young people and health service audit.
His main responsibility for the last 12 years has been the development and management of data collection tools for the Paediatric Intensive Care Audit Network (PICANet). Whilst contributing to annual scheduled publications as well as collaborating on a number of papers with external researchers.
Lee has expertise in data management, transformation, cleaning and analysis. Additionally, he has nearly two decades experience in system design and information governance.
Throughout his time at the University of Leeds, Lee has assisted the register team on an informal basis. Consulting on data, technical issues, information governance and data protection.
He formally joined the team in late 2023 on a part time basis alongside his roles on a number of other related projects. Lee has led on transitioning the trusted research environment that hosts the YSRCCYP to new providers and overseen the modernisation of the governance procedures to keep any data held safe.