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22 May 2019 Developments in Data for Rare and Less Common Cancers

Cancer52 & Public Health England

Wednesday, 22 May 2019 from 09:30 to 16:30 (BST)

London, United Kingdom

An innovative one-day event focussing on the developments in the production and use of data for rare and less common cancers.

The event will explore the developments in the production and use of data for rare and less common cancers. Working through the data pathway, leading experts will share insights on data collection processes, how data is used in analysis and research and the improvements it can support for services and patient outcomes.

You will hear from a range of speakers from across the cancer data community including charity, clinical and patient representatives.

Throughout the day you will have an opportunity to ask questions and understand more about how cancer data is supporting improvements for people with rare and less common cancers.

This event has a limited number of delegate places and as such registration is restricted to two delegates per organisation.

If you have any questions about the event or registering to attend, please contact

Event Pogramme - Subject to change

08.45 - 09.25

Registration, refreshments and networking


Welcome address

Jane Lyons, CEO, Cancer52


Setting the scene - NCRAS and data for rare and less common cancers

Jem Rashbass, Director for Disease Registration and Cancer Analysis, PHE


Data collection – How NCRAS works to support the collection of data for rare and less common cancers

Karen Graham, Head of Data Improvement, NCRAS


Development of the staging indicator

Lucy Elliss-Brookes, Head of Cancer Analysis, NCRAS


New methods of data collection – Retinoblastoma Register

Helen Jenkinson, Consultant Paediatric Oncologist at Birmingham Children’s Hospital

Paul Davies, Head of Registration NCRAS




Refreshments and networking


Making data available – insights from the Get Data Out Programme

Sophie Morris, Senior Project Manager NCRAS

Georgia Papacleovoulou, Policy and Intelligence Manager, Pancreatic Cancer UK

Will Jones, Chief Executive, brainstrust

Rebecca Rennison, Director of Public Affairs and Services, Target Ovarian Cancer


Analysis of data for rare and less common cancers:

1.Using linked primary care data to investigate diagnostic pathways of patients presenting with non-specific but concerning symptoms

Clare Pearson, Senior Cancer Analyst, CRUK-PHE Partnership & ACE Programme

2.Living with leukaemia; why data on patient quality of life is still relevant

Charlotte Martin, Advocacy Officer, Leukaemia Care

3.Epidemiology of neuroendocrine neoplasms (NENs) in the UK, 2013-2015

Tracey Genus, AMMF Partnership Analyst, NCRAS


Lunch and networking


Using NCRAS data to understand sarcoma services and impact outcomes

Sandra Strauss, Medical Oncologist at the London Sarcoma Service and NCRAS Clinical Lead


Analysis of data for rare and less common cancers:

1. National Mesothelioma Audit

Susie Harden, Lead Clinician for the National Mesothelioma Audit/ Clinical Oncologist/National Cancer Registration and Analysis Service Clinical Lead

2. Unmet needs of pancreatic cancer patients

Eila Watson, Professor of Supportive Cancer Care, Oxford Brookes University

3. How can we use SACT data to increase participation in clinical trials?

Alice Turnbull, Programme Manager - Systemic Anti-Cancer Therapy NCRAS

4. Developments in methodologies and advancement in data for Sarcoma in England between 2002 and 2016: The National Cancer Registration Analysis Service (NCRAS)

Kwok Wong, Senior Cancer Analyst, NCRAS


Refreshments and networking


How synthetic data can help us understand more about rare and less common cancers

Sophie Morris, Engagement and Awareness Manager, National Disease Registration, PHE


Question and Answer panel

‘The role of data in implementing and monitoring the Long-Term plan for rare and less common cancers’

Lucy Eliss-Brookes – Head of Cancer Analysis, National Cancer Registration and Analysis Service

Mr Andy Nordin – Consultant Gynaecological Oncologist, East Kent Gynaecological Oncology Centre/ National Cancer Registration and Analysis Service Clinical Lead

Amy Lee – Cancer Alliance Data, Evidence and Analysis Service Lead, NHS Cancer Programme

Rebecca Rennison - Director of Public Affairs and Services at Target Ovarian Cancer and Cancer52 trustee


Wrap up and close

Sarah McDonald, Director of Research & Policy Sarcoma UK/ Cancer52 Access to Data Group



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