Webinars

The National Disease Registration (NDRS) teams along side key stakeholders have produced a series of webinars to showcase and share our work in key areas of disease registration.

Select from the sections below to find out more about the webinar content, speakers and watch recordings of the webinars:

This webinar took place on 14 September 2023, and was presented by

• Nicola Wood, Impact & Communications Manager, NDRS
• Jack Anderson - Senior Partnership analyst, NDRS
• Laura Webster - Senior Partnership analyst, NDRS,
• Osa Adeghe - Partnership Project Manager, NDRS

During the webinar they covered the following topics:

• introduction to the 30-day mortality post-SACT data outputs – including background information around why they were introduced
• the Rapid Data Review reports, which provide timely data to support routine clinical audit processes
• the Case Mix Adjusted Rates, which is a 30-day mortality output that uses statistical modelling to support comparison of 30-day mortality rates
• examples of how NHS Trusts use the data 

This webinar took place on 24 May 2023, and was presented by:

• Dr Fiona McRonald NDRS Genomics Programme Manager
• Helen White -  Postgraduate (MRes) with lived experience of Lynch syndrome*
• Dr Catherine Huntley - Public Health Registrar and Clinical Research Fellow The Institute of Cancer Research

*This section of the talk will be published when the work is publicly available. 

During the webinar they covered the following topics:

• national evaluation of somatic and germline testing patterns in the Lynch syndrome diagnostic pathway.
• association between timing of genetic testing and cancer outcomes in Lynch syndrome.
• assembly of the English National Lynch Registry and use of the data to support the National Bowel Cancer Screening Programme

This webinar took place on 18 May 2023, and was presented by:

• Dr Sandra Strauss - Senior Clinical Lecturer and Honorary Consultant Medical Oncologist University College London Hospitals
• Andrew Bacon - Senior Information Analyst NDRS 
• Dr Sorrel Bickley - Director of Research, Policy and Support Sarcoma UK

During the webinar they covered the following topics:

• the clinical perspective - challenges in sarcoma, the importance of data and establishing a data partnership
• the analyst perspective - methodology and results published so far
• the charity perspective - translating the data for people affected by sarcoma, and what it means to them

This webinar took place on 10 May 2023, and was presented by Dr Jennifer Broughan - Principal Analyst, NDRS and Danielle Martin Senior Data Analyst NDRS.  During the webinar they covered the following topics:

• what is congenital anomaly registration, why it is in place and how the data is collected
• how the congenital anomaly registration data is used including
• the estimation of population-level statistics describing the prevalence and characteristics of congenital anomalies in England
• how the data can be used to support clinical audit and screening.

This webinar took place on 26 April 2023, and was presented by:

• Mary Bythell - NDRS Rare Disease Lead
• Dr Peter Lanyon - Consultant Rheumatologist Nottingham University Hospitals and Rare Disease Clinical Lead National Disease Registration Service
• Dr Fiona Pearce - NIHR Advanced Fellow, Honorary Consultant Rheumatologist Nottingham University Hospitals and Clinical Associate Professor, University of Nottingham

During the webinar the speakers covered the following topics:

• how people with non-genetic rare conditions face barriers in receiving accurate diagnosis and appropriate care
• the work NCARDRS has been undertaking to make people with these conditions “findable”
• specific examples of how the data can be used to produce actionable outputs and the challenges faced

This webinar took place on 12 April 2023, and was presented by Dr Claire Welsh - Principle Disease Intelligence Analyst. During the webinar she covered the following topics:

• why are health inequalities important
• what the NHS can do about them
• how NDRS are helping to reduce them
• our plans for reporting health inequalities in standard data outputs
• the decisions that need to be made around the safety and legality of such data
• our plans for the future in health inequalities.

This webinar took place on 29 March 2023. During the webinar the SACT team demonstrated the range of reports available to both the public through the CancerData website and NHS staff through the CancerStats2 reporting platform. The team covered the following reports during the session:

• routine activity
• data quality
• 30-day mortality post-systemic anti-cancer therapy (SACT)
• COVID-19 dashboard

The speakers were:

• Nicola Wood - Impact and Communications Manager, National Disease Registration Service
• Jack Anderson - Partnership Senior Analyst, National Disease Registration Service
• Michael Baser - Partnership Analyst, National Disease Registration Service

This webinar took place on 6 December 2022 and covered the following topics:

• the importance of and the effective use of rare disease data in delivering the ambitions of the UK Rare Disease Framework
• the opportunities and challenges of population-based rare disease registration
• how rare disease data registration is being used in practice and its clinical impacts
• understanding the data-related needs of stakeholders
• breakout rooms were used to discuss four topics in more detail, including the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), registries and collaboration, self-reporting and funding

The speakers were:

• Kath Bainbridge, Head of Genomics Science and Emerging Technologies, Department of Health and Social Care (DHSC)
• Sarah Stevens, Director National Disease Registration Service, NHS England
• Peter Lanyon, Consultant Rheumatologist Nottingham University Hospitals and Rare Disease Clinical Lead National Disease Registration Service
• Alistair Kent, Chair of the UK Rare Diseases Forum

This webinar took place on 14 October 2021 and covered the following topics:

• what is the NDRS and the Get Data Out programme?
• challenges in the release process
• the future of Get Data Out
• how Cancer52 and brainstrust initially worked with the Get Data Out team
• how brainstrust, Prostate Cancer UK, Action Against Heartburn, Pancreatic Cancer UK and Flight Bladder Cancer have used Get Data Out and had an impact

The speakers were:

• Anna Cooper, Cancer Information Analyst, NDRS
• Charlotte Eversfield, Senior Cancer Intelligence Analyst, NDRS
• Jane Lyons, CEO, Cancer52
• Will Jones, CEO, Brainstrust
• Thomas Harding, Knowledge Officer, Prostate Cancer UK
• Alan Moss, Chairman, Action Against Heartburn
• Georgia Papacleovoulou, Senior Policy and Intelligence Manager, Pancreatic Cancer UK
• Lydia Makaroff, Chief Executive, Fight Bladder Cancer

This webinar took place in line with Breast Cancer Awareness month on 7 October 2021 and covered the following topics:

• an overview of the NDRS
• an overview of the Breast screening After Radiotherapy Dataset (BARD)
• breast cancer and radiotherapy
• implications for clinical practice
• challenges / issues / future aims

The speakers were:

• Professor John Radford, The University of Manchester and The Christie NHS Foundation Trust
• Dr Joanna Williams, The University of Manchester, The Christie NHS Foundation Trust and Public Health England
• Professor Richard Cowan, The Christie NHS Foundation Trust
• Elsita Payne, Health Services Data Manager, NHS Digital

Please excuse the poor sound quality from 2 minutes 45 seconds, it doesn't last for long!

This webinar took place 23 September 2021 and covered the following topics:

• findings from the rare disease data collection discovery phase
• an introduction to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)
• inherited metabolic disease specialised services
• HLH work including cancer outcomes
• the RECORDER project COVID-19 findings

The speakers were:

• Mary Bythell, Head of Rare Disease Registration, NDRS
• Peter Stilwell, Higher Rare Disease and Cancer Analyst, NDRS
• Hanhua Liu, Senior Cancer Intelligence Analyst, NDRS
• Megan Rutter, Clinical Research Fellow, University of Nottingham

This webinar took place on 16 September 2021 and covered the following topics:

• an overview of the NDRS genomics programme
• unlocking the potential of genomic data within NDRS
• somatic and germline data collections in cancer
• examples of how the programme is supporting the genomics agenda and improving patient outcomes across the NHS

The speakers were:

Dr Steven Hardy, Head of Molecular and Diagnostics, NDRS

Dr Fiona McRonald, Genomics Programme Manager, NDRS

Professor Clare Turnbull, Professor of Translational Cancer Genetics, ICR and Consultant in Clinical Cancer Genetics, The Royal Marsden NHS Foundation Trust

This webinar took place on 9 September 2021 and covered the following topics:

• an overview of the COVID dashboards and the Rapid Cancer Registrations Dataset (RCRD) dashboard
• a case study of how she’s used the RCRD COVID dashboard and the impact its had
• an overview of the Radiotherapy Dataset (RTDS) COVID dashboard
• a case study of how she’s used the RTDS COVID dashboard and the impact its had

The speakers were:

• Laura Webster, Senior Cancer Analyst, NDRS
• Sarah Miller, Head of Informatics, Cancer Alliances, NHSE/I East of England Cancer Alliances
• Kat Roe, RTDS Project Lead, NDRS
• Katie Spencer, RTDS Clinical Lead, NDRS and Clinical Oncologist, University of Leeds

This webinar took place Thursday 2 September 2021 and covered the following topics:

• an overview of data sources and collection methods
• NDRS cancer data
• what is the National Cancer Registration and Analysis Service (NCRAS)?
• data sources and collection methodology at NCRAS
• patient pathways and data flows
• systems available

The speakers were:

Karen Graham, Head of Data Improvement, NDRS

Elsita Payne, Health Services Data Manager, NDRS

This webinar took place 30 April 2021 as part of Bowel Cancer Awareness Month and covered the following topics:

• who we are and what we do
• diagnosis of Lynch syndrome
• an overview of the dataset and how it’s being used to monitor and improve patient care
• findings from a study on how Lynch syndrome patients treated with aspirin had significantly reduced risk of bowel cancer
• next steps

The speakers were:

• Professor Sir John Burn
• Professor of Clinical Genetics, Newcastle University
• Dr Steven Hardy, Head of Molecular and Diagnostics, NDRS
• Dr Fiona McRonald, Genomics Programme Manager, NDRS

This webinar took place 9 December 2020 and covered the following topics:

• the NCARDRS path to national congenital anomaly data
• the value and impact of congenital anomaly registration

The speakers were:

• Jenny Broughan, NCARDRS
• Judith Rankin, Newcastle University

This webinar took place 25 November 2020 and covered the following topics:

• an introduction to NDRS’s work on rare diseases
• benefits to patients and stakeholders of rare disease registration
• opportunities for partnership working
• case study of the RECORDER project (Registration of Complex Rare Diseases – Exemplars in Rheumatology Project)

This webinar took place 18 November 2020 and covered the following topics:

• an introduction to radiotherapy
• The RTDS dataset: contents, purpose, governance.
• RTDS data reporting and access to data.

Practical examples of analytical outputs from the RTDS dataset include:

• operational reporting to hospitals
• supporting the Breast Screening After Radiotherapy Dataset
• Health Economics in Radio-Oncology (HERO)
• national Audits
• cancer registration

This webinar took place 4 November 2020 and covered the following topics:

• The SACT dataset: history, contents, purpose, governance.
• SACT data use for the Cancer Drugs Fund (CDF).
• SACT data reporting and access to data.

Two practical examples of analytical outputs from the SACT dataset were presented:

• mortality feeds: rapid data review and case-mix adjusted data.
• immunotherapies in melanoma.

This webinar took place 21 October 2020 and covered the following topics:

• he dataset: purpose; structure; and data quality overview.
• historical comparison to the regular cancer registration data.
• false positive and false negative rapid cancer registrations.
• what rapid pathway events are available.
• diagnostic and event volumes in 2020.

We are always looking for inspiration for future webinar topics and areas of interest. Please email the NDRS team at [email protected] with your ideas and suggestions.