Yorkshire Specialist Register of Cancer in Children and Young People

Who we are

Who we are

The YSRCCYP was originally set up in collaboration with local clinicians to provide research information. Since the YSRCCYP database and research programme was taken over by Professor Tricia McKinney in 1994 and moved into the Division of Epidemiology & Biostatistics, it has been further enhanced to aid in the investigation of disease aetiology and health services research.

Staff and postgraduate students currently working on the YSRCCYP are: 

Richard Feltbower

The Yorkshire Register research programme is led by Dr Richard Feltbower. Richard is an epidemiologist who 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.

Refs:
[1] Smith, L., Glaser, A.W., Peckham, D., et al., Respiratory morbidity in young people surviving cancer: Population-based study of hospital admissions, treatment-related risk factors and subsequent mortality. Int. J. Cancer, 2018.
[2] Fairley, L., Picton, S.V., McNally, R.J., et al., Incidence and survival of children and young people with central nervous system embryonal tumours in the North of England, 1990-2013. Eur. J. Cancer, 2016. 61:36-43.
[3] van Laar, M., Feltbower, R.G., Gale, C.P., et al., Cardiovascular sequelae in long-term survivors of young peoples' cancer: a linked cohort study. Br. J. Cancer, 2014. 110(5): 1338-41.

Kirsten Cromie

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).

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 from Public Health England and the electronic chemotherapy prescribing system ChemoCare.

Dr Nadia Amin

As the majority of children and young people now survive acute lymphoblastic leukaemia (ALL), the challenge has shifted to minimising treatment related toxicity. Osteonecrosis (ON) is one of the most serious complications of treatment, and can result in significant long term morbidity. My PhD was comprised of two main parts. The first part of my work was a retrospective review of patients with acute lymphoblastic leukaemia (ALL) who were recruited into the national study, UKALL 2003. This reported upon the UK prevalence of symptomatic osteonecrosis (ON) in young people with ALL, assessing the chronology of development of symptoms and subsequent diagnosis. This study also evaluated risk factors for the development of ON, and determined the joints most commonly affected.

The surgical and medical management of patients was described, with a review of long-term outcomes of patients. This is the largest single UK study reporting symptomatic ON in childhood ALL, providing long term follow up data of patients. The second part of my work was developing and setting up the British OsteoNEcrosis Study, a prospective longitudinal cohort study of patients aged 10-25 years diagnosed with ALL or lymphoblastic lymphoma. This is the first multi-centre prospective study using MRI imaging for assessment of asymptomatic ON in the UK, and combines physiotherapy assessment with imaging and biochemical results. Patient recruitment is ongoing, with interim results reviewed. My work has led to numerous positive outcomes, which are listed below:

Prizes and awards:

 Thesis award for research excellence

 New Investigator Award. International Conference on Children’s Bone Health, Wuzburg. 2017

Publications:

Amin N, Kinsey S, Feltbower R, Kraft J, Whitehead E, Velangi M, James B. British OsteoNEcrosis Study

(BONES) protocol: a prospective cohort study to examine the natural history of osteonecrosis in

older children, teenagers and young adults with acute lymphoblastic leukaemia and lymphoblastic

lymphoma. BMJOpen 2019. 9: e027204. doi10.1136/bmjopen-2018-027204

Amin NL, Feltbower R, Kinsey S, et al. Osteonecrosis in patients with acute lymphoblastic leukaemia:

a national questionnaire study. BMJ Paediatrics Open 2017;0:e000122. doi:10.1136/ bmjpo-2017-

000122

Amin N, James B, Phillips R. Should we be using bisphosphonates for osteonecrosis complicating

childhood acute lymphoblastic leukaemia? Arch Dis Child 2015doi:10.1136/archdischild-2015-

309934

Abstract: Amin N, Kinsey S, Feltbower R, Mushtaq T, James B. Prevalence, management, and long-

term outcomes of osteonecrosis in young people with acute lymphoblastic leukaemia. Endocrine

Abstracts 2015 (39)

Oral presentations:

Amin N et al. Surgical and radiographic outcomes in children and young adults with ALL affected by

osteonecrosis. British Society for Paediatric Radiology. Leeds. November 2019.

Amin N, Kinsey S, Feltbower R, Mushtaq T, James B. Prevalence, management, and long-term

outcomes of osteonecrosis in young people with acute lymphoblastic leukaemia. Presented at 43rd

Annual Meeting of the British Society for Paediatric Endocrinology and Diabetes 2015. Sheffield.

Poster presentations:

Amin N et al. Osteonecrosis results in significant long term morbidity in patients with acute

lymphoblastic leukaemia. International conference on children’s bone health. 2017 Wuzburg,

Germany

Amin N, Kinsey S, Feltbower R, Vora A, Goulden N, Wade R, Mitchell C, Hough R, Rowntree C, James

B. Analysis of Long-Term Outcomes, Management and Prevalence of Osteonecrosis in UKALL 2003:

3.5% of Adolescents and Young Adults over 10 Years of Age with Acute Lymphoblastic Leukaemia

Required Hip Replacement. Presented at 57 th Annual Meeting and Exposition of the American Society

of Haematolgy. 2015. Orlando.

Dr Adam Glaser

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.