Research

Research with children and young people with cancer has allowed 5-year survival rates to climb from 10% in the 1970s to 85% in the current decade. It has been an essential part of cancer care since the beginning, and Yorkshire and the Humber has been at the heart of hundreds of clinical studies over the years. The cancer clinical network is committed to continuing to make access to clinical studies as equitable, accessible, and comprehensive as possible.

Research does not just involve new drugs or laboratories. Investigating how people feel, how side effects can be managed or prevented, how different cancers occur in different groups (and have different outcomes) are all areas which can and are researched. In order to make information available as rapidly as possible, the links below will take you to partner sites which aggregate the majority of research opportunities currently open.

Research Highlight

The REFoRMS Project: Understanding Decision Making for RElapsed and REFractory RhabdoMyoSarcoma

Research Team:

Dr Bob Phillips
Dr Jess Morgan
Dr Gemma Bryan
Lucy Beresford
Connor Evans

REFoRMS is a research project run at the Centre for Reviews and Dissemination at the University of York. REFoRMS focus on a form of childhood cancer called rhabdomyosarcoma (RMS), when the disease has not responded to treatment (refractory) or has come back after treatment (relapsed). REFoRMS aim to bring together all studies of new or emerging treatments (early phase studies) for children and young people with relapsed and refractory RMS. It also aims to understand how families make decisions in this situation, and how they can be best supported in this.

The REFoRMS website is here: https://www.cclg.org.uk/our-research-projects/reforms-project and the project Twitter account is @REFoRMS_Rhabdo.

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PCOR (Patient Centred Outcomes Research)

Patient centred outcomes research (PCOR) conduct TYA specific research with one research programme running currently and one recently finished. Please their website for more information: https://pcor.org.uk/tya/

Strong-AYA

Programme Team:

Dan Stark
Oana Lindner
Richard Feltbower
Emily Connearn
Nicola Hughes
Rob Carter
Louise Hick
Faatimah Patel

Strong-AYA is a European network aiming to improve healthcare services, research and outcomes for adolescents and young adults (AYA’s) with cancer, defined as people aged between 15-39 years at cancer diagnosis. AYAs with cancer are distinct from the paediatric and the older adult cancer populations. Around half of AYA with cancer currently report unmet informational and service needs, impacting their survival rates, late effects of cancer and its treatment, mental health and recovery to participate in the society. Within STRONG-AYA, we will set up a healthcare research ecosystem to develop data-driven, interactive policy and visualization tools to bring novel insights into AYA healthcare.

Strong-AYA website - https://strongaya.eu/

STARS (Social Integration After a Cancer Diagnosis in Adolescents and Young Adults (AYA))

This project explored social outcomes after a cancer diagnosis. It is now in the write-up and dissemination phase. It was funded by the Economic and Social Research Council (ESRC ES/S00565X/1). It began in September 2019 and ended in August 2023. Follow them on Twitter/Instagram @YoungCancerLife for updates, news, and discussions on this project.

Partner Organisations

CCLG

https://www.cclg.org.uk/

CCLG research is focused only on cancers affecting children and young people. Through their funding of world-class research, they aim to deepen understanding and foster collaborations to support some of the most innovative and ground-breaking research into childhood cancer.

NIHR

https://www.nihr.ac.uk/

NIHR deliver paediatric and child health research funded by the NIHR, the life sciences industry and non-commercial organisations including charities. They have an additional focus on teenage and young adults with cancer. We support the set up and delivery of this research in the NHS and in public health and social care settings. Their research infrastructure also supports research funded by these partners, offering expertise, collaborations, and facilities.

They also provide opportunities for children and young people, and their families and carers, to influence and take part in health and care research.

VIVO Biobank

VIVO Biobank was formed in 2022 and is a merger of the CCLG Tissue Bank and the Blood Cancer UK Childhood Leukaemia CellBank. It is jointly funded by CRUK and Blood Cancer UK and provides a UK-wide research resource for samples and data from Children and Young People with cancer.

VIVO Biobank also supports the Service Specification for both children and TYA by providing biobanking facilities for all patients, whether or not they are on a clinical trial.

For further information please contact them on [email protected] or by visiting their website vivobiobank.org.

Yorkshire Specialist Register

https://ysrccyp.org.uk/

The Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP) is a regional population-based register of cancer diagnoses. It contains detailed demographic and clinical information on children and young adults aged 0-39 years diagnosed with cancer since 1974. The YSRCCYP facilitates a programme of research investigating the epidemiology of cancer in young people and describing outcomes for long-term survivors. Their data lets them know how many new cancers there are and where the people that have them live. This helps them make sure these people get the right care.

Yorkshire Supportive Care Research Centre

The Yorkshire Supportive Care Research Centre will officially launch on the 9th of November. More details to follow.

The Candlelighters Supportive Care Research Centre - Candlelighters

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Teenage and Young Adult Research

Teenage and Young Adult Research

The primary aim of TYAR is to create an age-appropriate resource which helps to inform TYAs about Clinical Trials, Biobanking and Genomics.

TYAR are a community of teenage and young adults that aims to educate each other and the wider world about our journey and experiences. Through this we hope it becomes easier to make better, more informed decisions that helps us and others.

TYAR.org – Teenage & Young Adult Research | Clinical Trials | Genomics | Biobanking