March 2025

Each month we share the latest news from the National Disease Registration Service (NDRS) including recent publications, data releases and upcoming events. 

NDRS is part of NHS England and includes the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS). NDRS uses data provided by patients and collected by the NHS as part of their care and support. This data is used to detect changes in the health of the population and to help the NHS improve the diagnosis and treatment of these diseases.

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Updates from NDRS

NHS England moving into Department of Health and Social Care

As many of you will know, the Prime Minister recently set out reforms that will bring NHS England back into the Department of Health and Social Care. We just wanted to let you know that our work remains unchanged for now and we wait for further news on these reforms. 

Data releases and tools

New detailed cancer statistics from Get Data Out

The Get Data Out (GDO) programme has released new detailed statistics on incidence, treatment, and routes to diagnosis. Our incidence data now covers diagnosis years 2013-2022, treatment data covers 2013-2021, routes to diagnosis data covers 2013-2020, and survival data covers 2013-2020. With this release we have added age-gender-standardised incidence rates, along with 50 new incidence columns. These break down the incidence in a GDO group by five-year-age and gender, broad ethnicity group, and deprivation quintile.

The data is available in an open format for anyone to access and use. You can find the data in the usual place on the GDO dashboard page.

Number of cancers diagnosed by Trust published

This week we published our Number of cancers by Diagnosis Trust output. This includes the number of cancers by NHS Diagnosis Trust, cancer site and diagnosis year (2017-2022) with further breakdowns by the demographic factors: age group, gender, major ethnic group and deprivation.

New Study on Survival Rates for Haematological Malignancies Published

NDRS has contributed to an article from EUROCARE-6, recently published in the European Journal of Cancer. This examines the survival rates of European children (aged 0-14 years) and adolescents and young adults (AYAs, aged 15-39 years) diagnosed with haematological malignancies between 2000 and 2013.

The study found that AYAs had poorer relative survival (RS) compared to children for acute lymphoblastic leukaemias (ALL) and acute myeloid leukaemia (AML), but better survival for chronic myeloid leukaemia (CML). No differences were observed for acute promyelocytic leukaemia (APL). AYAs also showed poorer RS for Hodgkin's lymphoma (HL) and various non-Hodgkin lymphomas (NHL). However, RS improved for AYAs between 2000 and 2013 for leukaemia overall, ALL, AML, and CML. Despite these improvements, the study highlights the need for further efforts to enhance outcomes for AYAs with haematological malignancies.

Paper on the impact of COVID-19 on the use of Systemic Anti-Cancer Therapy (SACT) published

An article entitled “The impact of the COVID-19 pandemic on the use of systemic therapy for patients diagnosed with cancer in England: A population-based study with a focus on breast and lung cancer” was published in the Journal Cancer Epidemiology this week. 

This study explores the role of patients’ cancer type and stage at diagnosis on their SACT pathway and time from diagnosis to receiving SACT. The findings highlight the baseline differences in the staging profiles and the delivery of SACT for breast and lung cancer and how changes in delivery were largely driven by a reduction in the number of patients who were diagnosed with cancer in 2020, and specifically for breast cancer, a reduction in early-stage diagnosis.

This research was delivered in a partnership of analysts, clinicians and academics from the NDRS, the NHS, University College London and University of Oxford.