The Yorkshire Register was originally set up by Professor Tricia McKinney during the 1980s in collaboration with local clinicians in Leeds and supported by the Candlelighters Trust to provide key research information on the patterns of disease across the region.
Since the Yorkshire Register research database was taken over by Professor Richard Feltbower in 2008 and supported by Professor Adam Glaser as Co-investigator and Medical Director since 2018, it has evolved into one of the world’s most detailed collections of cancer registration data to support research investigating 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 identify how young cancer survivors live with and beyond their original cancer diagnosis.
Staff and postgraduate students currently working on the YSRCCYP are:
Prof. Richard Feltbower
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 which at the time was headed by 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 [1-3]. 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.
Prof. Adam Glaser
Prof. Adam Glaser has 20 years experience as an NHS consultant specialising in paediatric oncology & the late effects of cancer. He was 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 & realised there was a lack of robust intelligence on the late effects of survival from cancer to allow for robust commissioning & 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 & 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.
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 Masters of Research in Epidemiology (Newcastle University). Most recently, Kirsten has been awarded the University of Leeds ‘Emma and Leslie Reid Research Scholarship’ (2020/2021) to fund a body of PhD research investigating the development of cardiovascular and metabolic diseases among long-term survivors of childhood and adolescent cancers.
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.
Dr Nicola Hughes
Nicola is a Speciality Registrar in Medical Oncology and 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 is based on the YSRCCYP with new linkage to Systemic Anti-Cancer Therapy dataset from Public Health England and the electronic chemotherapy prescribing system ChemoCare.
Dr Sarah Milner