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Data resource basics Cancer is a rare disease in children and young people[8],[9] and is commonly defined such that it includes any malignant tumour or benign central nervous system (CNS) tumour. Innovative data linkages with routinely collected administrative data facilitate the Yorkshire Register's world-leading programme of research on childhood and young-adult cancer outcomes, extending into ground-breaking areas of social and psychosocial morbidity. Key Features The Yorkshire Register is an established population-based research database of tumours diagnosed in the childhood, adolescent and young-adult age ranges.[1] Set up in 1984 to describe medium- and long-term outcomes for cancer survivors, it remains one of only three specialist databases in the UK covering the paediatric age range and the only one of its kind covering individuals diagnosed aged 25-29 years. 5 SMNs are defined as a malignant neoplasm of any site with a different morphology from that of the primary tumour regardless of time since diagnosis according to the recommended coding of multiple primary cancers.[21],[22] 6 ICCC-3, International Classification of Childhood Cancer (third edition)[20]; CNS, central nervous system. [Extracted from the article]

Objective: To assess the utilisation of and funding structure for fertility preservation for children diagnosed with cancer in the UK.Design: Survey of paediatric oncologists/haematologists. Questionnaires were sent electronically with reminder notifications to non-responders.Setting: UK Paediatric Oncology Principal Treatment Centres (PTCs).Participants: Paediatric oncologists/haematologists with an interest in the effects of treatment on fertility representing the 20 PTCs across the UK.Main Outcome Measures: Referral practices, sources and length of funding for storage of gametes or gonadal tissue for children diagnosed with cancer in the preceding 12 months.Results: Responses were received from 18 PTCs (90%) with responses to 98.3% of questions. All centres had referred patients for fertility preservation: ovarian tissue collection/storage 100% (n=18 centres), sperm banking 100% (n=17; one centre was excluded due to the age range of their patients), testicular tissue storage 83% (n=15), mature oocyte collection 35% (n=6; one centre was excluded due to the age range of their patients). All centres with knowledge of their funding source reported sperm cryopreservation was NHS funded. Only 60% (n=9) centres reported the same for mature oocyte storage. Of the centres aware of their funding source, half reported that ovarian and testicular tissue storage was funded by charitable sources; this increased in England compared with the rest of the UK.Conclusions: Inequality exists in provision of fertility preservation for children with cancer across the UK. There is lack of formalised government funding to support international guidelines, with resultant geographical variation in care. Centralised funding of fertility preservation for children and young adults is needed alongside establishment of a national advisory panel to support all PTCs. [ABSTRACT FROM AUTHOR]

Despite improved survival rates, cancer remains one of the most common causes of childhood death. The International Cancer Benchmarking Partnership (ICBP) showed variation in cancer survival for adults. We aimed to assess and compare trends over time in cancer mortality between children, adolescents and young adults (AYAs) and adults in the six countries involved in the ICBP: United Kingdom, Denmark, Australia, Canada, Norway and Sweden. Trends in mortality between 2001 and 2015 in the six original ICBP countries were examined. Age standardised mortality rates (ASR per million) were calculated for all cancers, leukaemia, malignant and benign central nervous system (CNS) tumours, and non‐CNS solid tumours. ASRs were reported for children (age 0‐14 years), AYAs aged 15 to 39 years and adults aged 40 years and above. Average annual percentage change (AAPC) in mortality rates per country were estimated using Joinpoint regression. For all cancers combined, significant temporal reductions were observed in all countries and all age groups. However, the overall AAPC was greater for children (−2.9; 95% confidence interval = −4.0 to −1.7) compared to AYAs (−1.8; −2.1 to −1.5) and adults aged >40 years (−1.5; −1.6 to −1.4). This pattern was mirrored for leukaemia, CNS tumours and non‐CNS solid tumours, with the difference being most pronounced for leukaemia: AAPC for children −4.6 (−6.1 to −3.1) vs AYAs −3.2 (−4.2 to −2.1) and over 40s −1.1 (−1.3 to −0.8). AAPCs varied between countries in children for all cancers except leukaemia, and in adults over 40 for all cancers combined, but not in subgroups. Improvements in cancer mortality rates in ICBP countries have been most marked among children aged 0 to 14 in comparison to 15 to 39 and over 40 year olds. This may reflect better care, including centralised service provision, treatment protocols and higher trial recruitment rates in children compared to older patients. What's new? Cancer mortality rates and trends are a function of both cancer incidence and survival and reflect the success of public health policy. Here, the authors compared mortality among children, adolescents and young adults, and older adults across six high‐income, universal health‐coverage nations between 2001 and 2015. They found a consistent temporal reduction in mortality rates in all populations. Changes in cancer mortality rates were larger among children than among adolescent and young adults or older adults. This may reflect the more centralised cancer care provision, more consistent uptake of treatment protocols, and higher trial recruitment rates in children compared to other age groups in these high‐income countries. [ABSTRACT FROM AUTHOR]

Background: Educational attainment in children with congenital heart disease (CHD) within the UK has not been reported, despite the possibility of school absences and disease-specific factors creating educational barriers., Methods and Results: Children were prospectively recruited to the Born in Bradford birth cohort between March 2007 and December 2010. Diagnoses of CHD were identified through linkage to the congenital anomaly register and independently verified by clinicians. Multivariable regression accounted for relevant confounders. Our primary outcome was the odds of 'below expected' attainment in maths, reading, and writing at ages 4-11 years.Educational records of 139 children with non-genetic CHD were compared with 11 188 age-matched children with no major congenital anomaly. Children with CHD had significantly higher odds of 'below expected' attainment in maths at age 4-5 years [odds ratio (OR) 1.64, 95% confidence interval (CI) 1.07-2.52], age 6-7 (OR 2.03, 95% CI 1.32-3.12), and age 10-11 (OR 2.28, 95% CI 1.01-5.14). Odds worsened with age, with similar results for reading and writing. The odds of receiving special educational needs support reduced with age for children with CHD relative to controls [age 4-5: OR 4.84 (2.06-11.40); age 6-7: OR 3.65 (2.41-5.53); age 10-11: OR 2.73 (1.84-4.06)]. Attainment was similar for children with and without exposure to cardio-pulmonary bypass. Lower attainment was strongly associated with the number of pre-school hospital admissions., Conclusion: Children with CHD have lower educational attainment compared with their peers. Deficits are evident from school entry and increase throughout primary school., (© The Author(s) 2023. Published by Oxford University Press on behalf of the European Society of Cardiology.)