Yorkshire Specialist Register of Cancer in Children and Young People

The Yorkshire Specialist Register of Cancer in Children and Young People is a regional population based register containing detailed demographic and clinical information on children and young adults aged 0-29 years diagnosed with cancer since 1974.  The YSRCCYP covers the Yorkshire and Humber SHA which has a total population of 5 million people. Spanning an area of 15,000 square kilometres the Yorkshire and Humber SHA comprises a range of urban and rural communities with a significant ethnic minority population resident in parts of West Yorkshire.

Yorkshire Specialist Register Map

The Candlelighters Trust has extended funding for the YSRCCYP, enabling data collection and epidemiological research to continue until August 2020. More recently additional funding has been provided by the Laura Crane Youth Cancer Trust.

Candle lightersLaura Crane Trust

Background

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 Dr Richard Feltbower (Principal Investigator), Ms Lesley Smith (Senior Research Statistician), Mr David Batty (Database manager), Mrs Paula Feltbower (Data Collection Manager), Mr Ben Gould (Data Collection Co-ordinator)   Dr Roger Parslow (Co-investigator), and Dr Nadia Amin (Clinical Research Fellow), Dr Amanda Friend (Clinical Research Fellow) and Dr Nicola Hughes (Clinical Research Fellow).

Aims and Objectives

The Yorkshire Specialist Register of Cancer in Children and Young People exists primarily to underpin epidemiological research examining the patterns and causes of cancer in children and young people and to facilitate health services research describing the patient experience in the context of care received by health professionals. The YSRCCYP is an established information resource for local clinicians and commissioners, and forms the basis for national and international collaborative research.

The core aims of the YSRCCYP are to:

  • Maintain the accurate and complete collection of clinical and socio-demographic data on children, teenagers and young adults with cancer in Yorkshire, specifically information not otherwise available from other routine NHS sources.
  • Investigate the effectiveness of healthcare delivery for children and young people, specifically the impact on survival and long-term health.
  • Undertake epidemiological research, comprising incidence and survival analyses.
  • Describe environmental risk factors for childhood and young adult cancer.

During the current funding period (2017-2020), we aim to:

  • Maintain accrual of accurate and complete information that is not routinely held by other regional UK cancer registries;
  • Produce timely information on childhood and young adult cancer statistics (e.g. numbers newly diagnosed) which can be used by patients, families and NHS service planners to inform the delivery of care across the Yorkshire and Humber Strategic Health Authority (SHA);
  • Describe and understand why males and females have different survival rates and health problems.  
  • Work with colleagues from the Yorkshire Malignancy Research Network to identify factors that are linked to better survival for those with leukaemia and lymphoma.  
  • Find out whether the teenage and young adult multidisciplinary team service introduced in 2007 has improved survival and reduced the number of hospital admissions. 
  • Focus on brain tumours, investigating survival from aggressive tumours, describing neurological problems amongst survivors, and assessing differences in risk for south Asians and non-south Asians.
  • Determine whether survival for young people with osteosarcoma has improved over recent years and what hospital services they require.  
  • Through a new collaboration with physiotherapy services investigate rehabilitation support for those with brain and bone tumours.

Current Research

Current research by the YSRCCYP includes;

  • Analysis of the long term effects of treatment on survivors of childhood and young adult cancer, following on from the work on cardiovascular related episodes within inpatient hospital admissions, with a specific focus on mental health and respiratory illness.
  • To identify factors which influence length of survival for low grade brain tumours, especially among adolescents and young adults, results which will contribute to a major European analysis of these tumours
  • To calculate future cancer incidence rates and prevalence statistics in Yorkshire between 2017-2030, firstly to enable healthcare managers to plan future services and secondly to supply the Candlelighters Trust with the latest cancer statistics for dissemination to families.
  • To investigate unusual family patterns of cancers which occur within siblings.
  • To assess the effect of chemotherapy on patient outcome using enhanced treatment data obtained through linkage with the national Systemic Anti-Cancer Therapy (SACT) dataset and hospital electronic prescribing systems such as ChemoCare.

Recent Results

Comparison of ethnic group classification using naming analysis and routinely collected data (Smith et al, 2017)

In this study we compared cancer incidence trends using different methods for assigning ethnic groups to individuals: 1 – using ethnic group recorded in hospital medical records, 2 – using a naming software program to assign an ethnic group based on the ethnic origins of the individuals and 3 – using a combination of both processes. We found that using different methods of assigning ethnicity can result in different estimates of ethnic variation in cancer incidence. Combining ethnicity from multiple sources results in a more complete estimate of ethnicity than the use of one single source. 

Access to principal treatment centres and survival rates for children and young people with cancer in Yorkshire (Fairley et al, 2017)

This study described access to Principal Treatment Centres (PTC) for children (0-14 years) and teenagers and young adults (15-24 years) and the associated trends in survival. Between 1998 and 2009, 72% of all patients aged 0-24 years received all their treatment at PTC whilst 13% had no treatment at PTC. Leukaemia patients who received no treatment at PTC had an increased risk of death which was partially explained by differences in patient case-mix (Adjusted hazard ratio = 1.73 (95% Confidence interval 0.98-3.04). For leukaemia, survival outcomes for low risk patients receiving no treatment at PTC were similar to high risk patients who received all treatment at PTC, implying a benefit of care at the PTC. Soft tissue sarcoma patients who had some or no treatment at PTC had better survival outcomes, which remained after adjustment for patient case-mix (adjusted HR = 0.48 (95%CI 0.23–0.99)), however we were unable to account for differences in stage at presentation, which may confound this finding. There were no significant differences in outcomes for other diagnostic groups (lymphoma, CNS tumours, bone tumours and germ cell tumours)

Level of treatment at PTC by diagnostic group and age group, Yorkshire 1998–2009

PTC access Fairley BMC Cancer 2017

Population mixing and incidence of cancers in adolescents and young adults between 1990 and 2013 in Yorkshire, UK (Imam at al, 2016)

This study investigated the associations between infection transmission using the population mixing proxy and incidence of cancers in 15-24 year olds in Yorkshire. No significant associations between population mixing and cancer incidence were found for leukaemias, lymphomas, central nervous system tumours or germ cell tumours. This effect did not differ between urban and rural areas. 

Incidence and survival of children and young people with central nervous system embryonal tumours in the North of England, 1990 – 2013 (Fairley et al, 2016)

This study described the incidence and survival from CNS embryonal tumours, specifically medulloblastoma and primitive neuroectodermal tumours (CNS PNET), for children (0-14 years) and teenagers and young adults (15-24 years) in the North of England. Between 1990 and 2013 the incidence of medulloblastoma decreased over time, most likely due to improvements in molecular testing and classification of tumours over time. The risk of death was 2.4 times higher for patients with CNS PNET compared to medulloblastoma (Hazard ratio = 2.4 (95% Confidence Interval 1.6-3.7) and the risk of death decreased by 39% for patients diagnosed since 2000 compared to those diagnosed in the 1990s (HR=0.61 (95%CI 0.43, 0.87). Although the initial prognosis was worse for CNS PNET compared to medulloblastoma, for those who survived 3 years from diagnosis, survival probabilities for the next five years were similar in both groups (85% for medulloblastoma and CNS PNET) 

Survival of childhood acute lymphoid leukaemia in Yorkshire by clinical trial era, 1990-2011 (van Laar et al, 2015)

This study described gender differences in survival by clinical trial era for children with acute lymphoid leukaemia (ALL) enrolled into UKALLXI, ALL97/99 or UKALL2003. For males, there was a non-significant improvement in survival for ALL97/99 (hazard ratio (HR) = 0.77; 95% confidence interval (CI) 0.43-1.42) and a significant improvement for UKALL2003 (HR = 0.50; 95%CI 0.25-0.99) compared to UKALLXI. For females, survival was significantly improved for ALL97/99 (HR = 0.33; 95%CI 0.14-0.78), and non-significantly improved for UKALL2003 (HR = 0.51; 95%CI 0.25-1.08) compared to UKALLXI. 

Cardiovascular Late Effects (van Laar et al, 2014)

Amongst those diagnosed with cancer under the age of 30 in Yorkshire since 1990, 3.6% of individuals had at least one cardiovascular related hospital admission 5-years or more beyond diagnosis. Compared to the general age and sex matched population in Yorkshire, cardiovascular hospitalisations for children surviving a cancer diagnosed under the age of 15 were 3-fold higher overall. For young adults surviving cancer diagnosed between 15 and 29 years of age, increased rates of cardiovascular hospitalisations were limited to ‘pericardial disease’, ‘cardiomyopathy and heart failure’, ‘pulmonary heart disease’, ‘hypertension’ and ‘conduction disorders’. 

Hospitalisation rate ratios and 95% confidence intervals comparing cardiovascular late effects amongst cancer survivors to the general population by age at diagnosis (for all cancer diagnosis in Yorkshire between 1991 and 2006)

Cardiovascular late effects of survivors of childhood cancer are increased when compared to the general population as shown on this forest plot.

Survival Rates (van Laar et al, 2012)

Survival rates were significantly poorer for south Asians with leukaemia and lymphoma when compared to non-south Asians (Hazard Ratio = 1.75 and 2.05 respectively).   Whereas south Asians with solid tumours other than central nervous system tumours had a significantly reduced risk of death (Hazard Ratio = 0.50) compared to non-south Asians. These effects were independent of socioeconomic deprivation.

Kaplan Meier survival estimates comparing south Asian and Non-south Asian 0-29 year olds with leukaemia (top) and lymphoma (bottom), 1990-2005.

Survival of leukaemia for children and young adults with cancer by ethnic group

Survival of lymphoma for children and young adults with cancer by ethnic group

Incidence Rates (van Laar et al, 2010)

Overall incidence rates of childhood and young adult cancer were 145.2 (95% CI 127.9–162.5) per million person years for south Asians and 151.4 (95% CI 146.2–156.6) for non-south Asians in Yorkshire between 1990 and 2005.  Although overall rates were similar, there was a significant difference in the annual rate of increase in incidence between non-south Asians and south Asians, with rates going up by 1.9% and 7%. If present trends continue, the higher rate of increase seen among south Asians aged 0–29 years in Yorkshire will result in three times higher cancer incidence than non-south Asians by 2020 as shown in the graph below.

Incidence rates and predictions comparing south Asian and non-south Asian 0-29 year olds with cancer in Yorkshire, 1990-2005

incidence rates for south asian and non south asian children and young adults with cancer

Recent Publications

Smith L, Norman P, Kapetanstrataki M, Fleming S, Fraser LK, Parslow RC, Feltbower RG. Comparison of ethnic group classification using naming analysis and routinely collected data: application to cancer incidence trends in children and young people. BMJ Open 2017, 7 (9) e016332; DOI: 10.1136/bmjopen-2017-016332 

Fairley L, Stark DP, Yeomanson D, Kinsey SE, Glaser AW, Picton SV, Evans L, Feltbower RG. Access to Principal Treatment Centres and survival rates for children and young people with cancer in Yorkshire, UK. BMC Cancer 2017; 17: 168. doi: 10.1186/s12885-017-3160-5

Basta NO, Halliday GC, Makin G, Birch J, Feltbower R, Bown N, Elliott M, Moreno L, Barone G, Pearson AD, James PW, Tweddle DA, McNally RJ. Factors associated with recurrence and survival length following relapse in patients with neuroblastoma. Br J Cancer 2016; 115: 1048-1057. doi:10.1038/bjc.2016.302

Imam A, Fairley LF, Parslow RC, Feltbower RG. Population mixing and incidence of cancers in adolescents and young adults between 1990 and 2013 in Yorkshire, UK. Ca Cause Control 2016; 27: 1287-1292. doi:  10.1007/s10552-016-0797-3

Fairley L, Picton SV, McNally RJQ, Bailey S, McCabe MG, Feltbower RG. 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 doi: 10.1016/j.ejca.2016.03.083

Althumairi A, Feltbower RG, van Laar M, Kinsey SE, Glaser AW, Picton SV. Patterns of hospital admissions and length of stay during 1996 to 2011 among children compared with teenagers and young adults after completing treatment following diagnosis with cancer in Yorkshire. Eur J Cancer Care 2015; 24: pp.9-9.

van Laar M, Kinsey SE, Feltbower RG. Survival of Childhood Acute Lymphoid Leukaemia in Yorkshire by Clinical Trial Era, 1990-2011. Br J Haematol 2015; 171: 116-9. doi: 10.1111/bjh.13524

Stark DP, Bowen D, Dunwoodie E, Feltbower RG, Johnson R, Moran A, Stiller CA, O’Hara C. Survival patterns in teenagers and young adults with cancer in the United Kingdom: comparisons with younger and older age groups Eur J Cancer 2015; 51 (17): 2643-54. doi: 10.1016/j.ejca.2015.08.010

O’Hara C, Moran A, Feltbower RG, Stevens MCG, Stiller CA, Whelan JS, Hough RE, Stark DP, McCabe MG. Trends in survival for teenagers and young adults with cancer in the UK 1992-2006. Eur J Cancer 2015; 51: 2039-48. doi: 10.1016/j.ejca.2015.06.112

van Laar M, Stark DP, McKinney P, Parslow RC, Kinsey SE, Picton SV, Feltbower RG. Population mixing for leukaemia, lymphoma and CNS tumours in teenagers and young adults in England, 1996-2005. BMC Cancer 2014; 14: 698. doi: 10.1186/1471-2407-14-698

van Laar M, Feltbower RG,  Gale CP,  Bowen DT, Oliver SE, Glaser A. Cardiovascular sequelae in long term survivors of young people’s cancer – a linked cohort study. Br J Cancer (2014) Advanced Online Publication: doi:10.1038/bjc.2014.37. 

Harbron RW, Glaser AW, Lillee J, Pearce MS, Feltbower RG. Secondary malignant neoplasms following radiotherapy for primary cancer in children and young adults. Ped Hem Onc (2013) Advanced Online Publication: doi:10.3109/08880018.2013.838723.

van Laar M, Kinsey SE, Picton SV, Feltbower RG. Seasonality of diagnosis in cancer amongst 15-24 year olds in England, 1996-2005. BMC Cancer 2013; 13(1):365-374.

van Laar M, Glaser A, Phillips RS, Feltbower RG, Stark DP. The impact of a managed transition of care upon psychosocial characteristics and patient satisfaction in a cohort of adult survivors of childhood cancer. Psycho‐Oncology 2013; 22(9):2039-2045.

Birch RJ, Morris EJ, West RM, Stark DP, Lewis I, Morgan S, Feltbower RG. A cross-sectional survey of healthcare professionals to determine what they believe constitutes 'specialist' care for teenage and young adult patients with cancer. BMJ Open 2013; 3(5).

Lethaby CD, Picton S, Kinsey SE, Phillips R, van Laar M, Feltbower RG. A systematic review of time to diagnosis in children and young adults with cancer.  Archives of Diseases in Childhood 2013; 98:349-55.

L K Fraser, M van Laar, M Miller, J Aldridge, P A McKinney, R C Parslow and R G Feltbower. Does referral to specialist paediatric palliative care services reduce hospital admissions in oncology patients at the end of life?  British Journal of Cancer (2013). [Advanced Online Publication].

BD Nicholson, S Picton, P Chumas, S Dixit, M van Laar, C Loughrey, G O’Reilly, D Stark, RG Feltbower. Changes in the patterns of care of central nervous system tumours among 16-24 year olds and the impact on survival in Yorkshire between 1990-2009. Clinical Oncology 2013. 25(3): 205-214.

Richard JQ McNally, Peter W James, Susan V Picton, Patricia A McKinney, Marlous van Laar and Richard G Feltbower. Space-time clustering of childhood central nervous system tumours in Yorkshire, UK. BMC Cancer 2012. 12(13) doi:10.1186/1471-2407-12-13

M. van Laar, P.A. McKinney, D.P. Stark, A. Glaser, S.E. Kinsey, I.J. Lewis, S.V. Picton, M. Richards, P.D. Norman, R.G. Feltbower. Survival trends of cancer among the south Asian and non-south Asian population under 30 years of age in Yorkshire, UK. Cancer Epidemiology 2012. 36(1); e13-e18.

Fraser LK, Miller M, McKinney PA, Parslow RC, Feltbower RG. Referral to a Specialist Paediatric Palliative Care Service in Young Oncology Patients in Yorkshire.  Ped Blood Cancer 2011; 56: 677–680. doi: 10.1002/pbc.22667

Feltbower RG, Siller C, Woodward E, McKinney PA, Picton SV, Joffe JK, Stark DS.  Treatment and survival patterns for germ cell tumours among 13-24 year olds in Yorkshire, UK.  Ped Blood Cancer 2011; 56: 282-288.

Funding and Ethical Approval

Funding

The Candlelighters Trust has supported the work of the Yorkshire Register YSRCCYP for 30 years, and has announced their continuation to do so for a further 3 years. In total, we have received over £1.5M in funding from the Candlelighters Trust.

Since 2017 funding has been provided by the Laura Crane Youth Cancer Trust in addition to the Candlelighters Trust,  securing grant funding of £232,000 for the epidemiological research programme through until August 2020.

Ethical Approval

The YSRCCYP has ethical approval from the Northern and Yorkshire Multi Centre Research Ethics Committee (MREC) and approval under section 251 of the NHS Act (2006) for holding identifiable patient data from the Health Research Authority Confidentiality Advisory Group (CAG).

Documentation

General background information leaflets for the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP) are circulated to children and their parents attending clinic appointments at Leeds General Infirmary. The information leaflets and YSRCCYP protocol can be downloaded by clicking the link below. The data collection form, procedure manual and data manual are also available via this link (you will need Adobe Acrobat Reader to view these documents).

National and International Collaboration

Dr Feltbower was appointed to the National Cancer Intelligence Network Children Teenagers and Young Adults Site Specific Clinical Reference Group in May 2013 where he provides a key role in representing the UK specialist tumour registries. He is the current chair of the Children's Cancer and Leukaemia Group (CCLG) Epidemiology and Registry Group (2017-2020). He was a member of the National Cancer Research Institute Teenage and Young Adult Clinical Studies Group from 2005-2013 which oversaw the establishment of the national TYA registry function at the North West Cancer Intelligence Network. He also remains an active member of the National TYA Advisory Group. Together with his role as a member of the TYAC Research and Registration professional group and the CCLG Epidemiology and Registry Group, Dr Feltbower represents the register nationally as an exemplar of high quality epidemiological and applied health research.

Data linkage work from the YSRCCYP was cited by the US Agency for Healthcare Research and Quality as an example of how disease registries can help to evaluate patient outcomes using routine health datasets. The full entry appears in the second edition of the handbook, ‘Registries for Evaluating Patient Outcomes: A User's Guide’.

Ongoing collaborations continue with the Northern Region Young Person's Malignant Disease Register held at the University of Newcastle, c/o Dr Richard McNally. Dr Feltbower is an Honorary Research Fellow at Newcastle, and named collaborator on studies evaluating the epidemiology of bone cancers in children and young people and survival following relapse after diagnosis of advanced neuroblastoma. 

Further collaborative multi-centre studies include the Childhood Leukaemia International Consortium (CLIC) in collaboration with Professor Jill Birch and the International Consortium for the Epidemiology of Childhood Brain Tumors, an international case-control study on aetiological factors for childhood CNS tumours in collaboration with Professor Jill Birch and Dr Michael Scheurer.

The registry research staff collaborate closely with colleagues from the Danish Cancer Survivorship research group (Dr Jeannette Winther, Dr Tina Andersen), where a comparative analysis is underway examining the risks of long-term effects of cancer treatment in the Yorkshire and Danish childhood cohorts. 

Scientific Advisory Group

The YSRCCYP’s Scientific Advisory Group was established in March 2006 and meets twice per year. Originally chaired by Professor David Forman, the steering group is now chaired jointly by Mr Charles Stiller (Oxford) and Dr Richard McNally (Newcastle), two esteemed epidemiologists who bring an independent perspective to the work in their roles as Directors of the National Registry of Childhood Tumours and the Northern Region Young Person’s Malignant Disease Register respectively. The group has acted as a successful forum to discuss research progress and agree aims and objectives. It provides an important feedback mechanism from a field of experienced cancer researchers, oncologists, cancer registry staff, public health professionals and GPs.

Steering Group Membership
 Name  Speciality  Institution
Mr. Charles Stiller (Co-Chair) Lead on Childhood Cancer PHE/National Cancer Registration and Analysis Service
Dr Richard McNally (Co-Chair) Epidemiology/Northern Region Young Persons Malignant Disease Register North of England Children’s Cancer research Unit,
Sir James Spence Institute of Child Health,
University of Newcastle upon Tyne
Queen Victoria Road
Newcastle upon Tyne
NE1 4LP
Dr Richard Feltbower Senior Lecturer
School of Medicine/LIDA 
University of Leeds
Worsley Building
Clarendon Way, Leeds
LS2 9JT
Mrs Lesley Smith
Statistician
School of Medicine/LIDA
University of Leeds
Worsley Building
Clarendon Way, Leeds
LS2 9JT
Mrs. Paula Feltbower
Data Collection Manger
School of Medicine/LIDA
University of Leeds
Worsley Building
Clarendon Way, Leeds
LS2 9JT
Mr Ben Gould Data Collection Co-ordinator School of Medicine/LIDA
University of Leeds
Worsley Building
Clarendon Way, Leeds
LS2 9JT
Dr Adam Glaser Paediatric Oncology/Psychosocial
Children’s Day Hospital
Leeds General Infirmary
Dr Dan Stark Clinical lead for Teenage and Young Adult Cancer (Leeds Teaching Hospitals NHS Trust)
Consultant Medical Oncologist
Institute of Oncology
Bexley Wing
St James’s Hospital
Beckett Street
Leeds LS9 7TF
Prof Sue Burchill
Clinical Oncology
Cancer Research UK Clinical Centre
St James’s Hospital
Beckett Street
Leeds LS9 7TF
Mr David Batty 
Database Development 

LIDA
University of Leeds 
Worsley Building 
Clarendon Way, Leeds 
LS2 9JT

Dr Russell Patmore Consultant Haematologist Hull Royal Infirmary
Hull
HU3 2JZ
Dr Anthony Moorman
Cytogenetics/Haematological tumours
Northern Institute for Cancer Research
Newcastle University
Paul O'Gorman Building
Medical School
Framlington Place
Newcastle upon Tyne
NE2 4HH
Dr Linda Evans
Consultant Medical Oncologist(Teenage and Young Adult Specialist)
Weston Park Hospital
Whitham Road
Sheffield
S10 2SJ
Dr Paul Roberts  Cytogenetic Laboratory Head Cytogenetic Laboratory
St James's Hospital
Beckett St.
Leeds LS9 7TF
Dr Helen Jenkinson Consultant Paediatric Oncologist 

Birmingham Children's Hospital      Steelhouse Lane                      Birmingham                                          B4 6NH

Helen Curry Registry Manager  West Midlands Regional Children's Tumour Registry                                      Oncology Department                Birmingham Children's Hospital  Steelhouse Lane                      Birmingham                                          B4 6NH
Dr Liz Mitchell Senior Lecturer in Primary Care Research

Academy of Primary Care                  Allam Medical Building                University of Hull                                Hull                                                    HU6 7RX