November 2024

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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Strategic plan

NDRS Strategic Plan 2024 – 27

NDRS published its strategic plan for 2024-2027, outlining a vision to enhance population health and patient outcomes through high-quality disease registration data and analysis.

The plan emphasises five strategic priorities: improving data timeliness and accessibility, addressing health inequalities, strengthening infrastructure, fostering collaboration, and driving innovation. Key initiatives include adapting registration processes for faster data availability, expanding data coverage to include more conditions, and leveraging advanced technologies for better data linkage.

This comprehensive approach is designed to ensure that the NDRS remains a globally trusted curator of disease data, providing timely insights and evidence to improve healthcare services and research.

Latest Publications

National Rapid Prenatal Exome Sequencing Service

NDRS has contributed to the EXPRESS (optimising EXome PREnatal Sequencing Services) study – led by Professor Dame Lyn Chitty as a collaboration between GOSH, University of Oxford, Birmingham Women’s and Children’s Hospital and NDRS – to evaluate the impact of rapid prenatal whole exome sequencing (pWES) as part of antenatal care.  Rapid pWES was introduced as a diagnostic test in 2020 to help improve the timely diagnosis of rare genetic conditions where fetal anomaly(ies) are detected on ultrasound.  An underlying genetic cause of the fetal anomaly(ies) was confirmed in a third of pregnancies receiving testing, improving our understanding of the prenatal presentation of certain rare genetic conditions and crucially providing timely information to support decision making during pregnancy.  

NDRS data was used throughout the study to evaluate the cohort who received pWES testing and the Maternity Services Dataset (MSDS) was used to create denominator data.  The project is an excellent example of how we can use NDRS data to provide high quality intelligence to improve patient care.

Data releases and tools

Second phase of Digital Transformation: Launch of New Cancer Data Hub

Over the last 4 years, NDRS has undergone a significant digital transformation project, starting with the creation of the new NDRS website and the migration of all NDRS related online content to this new single point of access site. More recently we have focused on the second phase of the project, to migrate all content from the legacy CancerData platform to the new NDRS website.

We are delighted to announce that this week we completed this migration and from today all publicly available cancer dashboards will be published in the new Cancer Data Hub area of the NDRS website. This brings together a large collection of our cancer analytical outputs including incidence, mortality and prevalence statistics, data on diagnostic pathways, treatments and on people living with cancer as well as supporting documentation. This is significant step for NDRS and our efforts to make our content more discoverable and accessible for all audiences.

The CancerData platform will be decommissioned at the end of this calendar year. 

New locations for the Rapid Cancer Registration Data (RCRD) dashboards

We have updated the web-links for the Incidence and treatment dashboards which use the Rapid Cancer Registration Dataset (RCRD). The publicly available dashboards are now accessible via the Cancer Data Hub.
We have also updated the link for the dashboard which is hosted in CancerStats2 (which requires a secure HSCN connection to access). We continue updating these dashboards with data for recent months, with the latest update including diagnoses up to July 2024 and treatment data until at least February 2024.

BRCA Testing Dashboard Released

The genomics team has launched the first BRCA Testing After a Cancer Diagnosis dashboard. It shows how many breast and ovarian cancer patients, who should get BRCA1 and BRCA2 tests based on their cancer diagnosis are actually being tested. The data is presented by region, age, ethnicity, deprivation, diagnosis stage, and eligibility criteria from the National Genomic Test Directory (NGTD). This tool helps identify gaps in testing by comparing the number of eligible patients to those who have been tested. The data includes patients diagnosed between 2016 and 2020, with follow-up until the end of 2021.

Updates to the Systemic Anti-Cancer Therapy (SACT) and Radiotherapy Data Set (RTDS) public dashboards

In October, we updated both the SACT activity dashboard and the RTDS dose and fractionation dashboard with more recent data. The SACT activity dashboard now reports on SACT administered up to February 2024, and the RTDS dose and fractionation dashboard reports on radiotherapy administered up to June 2024.

Systemic Anti-Cancer Therapy (SACT) data set v4 formal consultation

On 13 November, we invited our key stakeholders to take part in the consultation of the proposed next version changes to the SACT data set. This is an important step of the review process and helps us to understand if the clinical review we conducted, and the resulting data set changes, will continue to support clinical teams to improve patient outcomes, and enable important analytical work by NDRS, our partners, and other data users. If you would like to take part in the review, please contact our dataset helpdesk. 

Current Vacancies

Business Intelligence Manager vacancy

NDRS currently have a vacancy for a Data & Analytics Support Specialist. The advert is open to both internal and external candidates and closes on 4 December 2024. All applications must be submitted through the NHS jobs website.

As a Business Intelligence Manager (Data & Analytics Support Specialist) at NDRS, you will be responsible for planning, developing, delivering, and maintaining meaningful data visualisations based on routinely collected healthcare datasets. Your work will be crucial in providing the necessary analysis and insights to support the successful delivery of the NDRS work programme, ultimately informing patient care and impacting patient outcomes.

You will engage with NHS stakeholders to understand and meet their reporting needs, present data in various formats including online dashboards, and lead the development of Business Intelligence outputs for disease reporting. Additionally, you will act as an expert in your area, responding to data requests and providing guidance on Business Intelligence outputs to both internal and external stakeholders.

Please see advert for full details and contact [email protected] if you have any questions about this role.

Business Analysis Manager vacancy

NDRS IT currently have a vacancy for a Business Analyst Manager. The advert closes on 2 December 2024. All applications must be submitted through the NHS jobs website.
 
The successful candidate would be the leading Business Analyst (BA) on various projects and responsibilities will include defining overarching strategies, prioritising business requirements, conducting comprehensive feasibility studies, developing high-level and detailed business models, and overseeing the end-to-end definition and implementation of integrated solutions. The role includes line management responsibilities with an expectation to support and develop other team members. It is a technical role so experience as a BA on other IT projects would be highly desirable. 

Please see advert for full details and contact [email protected] if you have any questions about this role.