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 NDRengagement@phe.gov.uk
Event Pogramme - Subject to change
08.45 - 09.25
Registration, refreshments and networking
09.30
Welcome address
Jane Lyons, CEO, Cancer52
09.40
Setting the scene - NCRAS and data for rare and less common cancers
Jem Rashbass, Director for Disease Registration and Cancer Analysis, PHE
09.55
Data collection – How NCRAS works to support the collection of data for rare and less common cancers
Karen Graham, Head of Data Improvement, NCRAS
10.10
Development of the staging indicator
Lucy Elliss-Brookes, Head of Cancer Analysis, NCRAS
10.30
New methods of data collection – Retinoblastoma Register
Helen Jenkinson, Consultant Paediatric Oncologist at Birmingham Children’s Hospital
Paul Davies, Head of Registration NCRAS
10.45
Questions
11.00-11.25
Refreshments and networking
11.30
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
12.10
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
12.50-13.40
Lunch and networking
13.45
Using NCRAS data to understand sarcoma services and impact outcomes
Sandra Strauss, Medical Oncologist at the London Sarcoma Service and NCRAS Clinical Lead
14.10
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
15.00-15.25
Refreshments and networking
15.30
How synthetic data can help us understand more about rare and less common cancers
Sophie Morris, Engagement and Awareness Manager, National Disease Registration, PHE
15.45
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
16.15
Wrap up and close
Sarah McDonald, Director of Research & Policy Sarcoma UK/ Cancer52 Access to Data Group
16.30
Close
To register please visit https://www.eventbrite.co.uk/e/developments-in-data-for-rare-and-less-common-cancers-tickets-59878855268