Resources & Links
This list includes organisations we work with and useful sources of information.
Cancer Research UK
Our aim is to save lives from cancer. We do this through funding world-class research, providing information for patients, health professionals and the public, and influencing public policy to keep cancer at the top of the health agenda.
UKCRC Tissue Directory and Coordination Centre
The Centre was established to coordinate biobanking activity in the UK. Our flagship product is our directory of biobanks that allows researchers to find biobanks across the UK. https://www.biobankinguk.org/
For more information on donating tissue got to
Give My Sample an independent website designed to help you decide if you want to give samples for medical research http://www.givemysample.org/
National Audit of Breast Cancer in Older Patients (NABCOP)
NABCOP is a national clinical audit run by the Association of Breast Surgery (ABS) and the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons of England (RCS). NABCOP is working to improve the quality of hospital care for older patients with breast cancer. NABCOP
Cancer and Nutrition - NIHR infrastructure collaboration
Cancer now represents the major cause of mortality in the UK, and nutritional factors play an important role in the prevention, development and treatment of cancer. While the UK has internationally competitive research in both nutrition and cancer, there is only a relatively small amount on the overlap between the two areas.
Initiated in early 2014, the Cancer and Nutrition NIHR infrastructure collaboration is coordinated by the NIHR Southampton Biomedical Research Centre (Southampton BRC) to bring together a range of interdisciplinary stakeholders in order to bring coherence to existing activities and provide a coordinated framework for future research into nutrition and cancer. The Collaboration is facilitated by the NIHR Office for Clinical Research Infrastructure(NOCRI) and World Cancer Research Fund UK (WCRF UK).
Discover more and download the latest report at Cancer and Nutrition
Cancer Campaigning Group
The Cancer Campaigning Group (CCG) is a coalition of national cancer-related charities representing service providers, research, advocacy and campaigning groups for cancer patients and their families. Founded in 2002, it enables cancer charities to speak and campaign with a single unified voice.
The aim of the CCG is to campaign for improved cancer policy and services in the areas of prevention; care and treatment; patient involvement and choice; and research.
Confederation of Cancer Biobanks (CCB)
The National Cancer Research Institute's (NCRI) Confederation of Cancer Biobanks (CCB) is a consortium of organisations based in the UK that are involved in the development, management and use of biobank resources for cancer research. It was launched in 2006 and the secretariat is provided by NCRI.
ICPV members Maggie Wilcox and Derek Stewart are lay members of the board and regularly speak at events. For more information go to
To download the new standards go to http://ccb.ncri.org.uk/biobanking/harmonisation-and-benchmarking
Breast Cancer Now
UK’s largest breast cancer research charity
A number of ICPV members are involved with the Breast Cancer Now Tissue Bank http://breastcancertissuebank.org/about-tissue-bank.php
Association of Breast Surgery (ABS)
In recent years there have been enormous advances in the treatment of breast cancer. However, few people appreciate that surgery remains the foundation of treatment and is responsible for curing many people.
Whilst there have been many significant breakthroughs with new cancer drugs, less is known about the advances in cancer surgery over this time. Breast cancer surgery has changed so that complete removal of tumours can now be achieved as well as a good cosmetic result. As a result, more people are now able to lead normal and fulfilling lives.
The Association of Breast Surgery (ABS) is working to improve surgery and standards of care for people with breast cancer. Along with the other specialist surgical societies, we have promoted specialisation of UK surgeons to ensure that patients see surgeons with a special interest in breast cancer. The ABS will continue to promote earlier diagnosis, develop better treatment and guidelines to ensure high quality treatment for all in the UK
Manchester Breast Centre
The mission of the MBC is to create a world-class centre for basic and translational breast cancer research, leading to effective detection and treatment of women at risk, and ultimately
elimination of the disease. The MBC currently consists of 19 Principal Investigators and is directed by Dr Robert Clarke, Reader in Breast Biology, Breast Cancer Now Research Unit.
The aim of the MBC is to enhance research in breast biology and breast disease through collaboration and two major units are incorporated: Prevent Breast Cancer Centre, which was established in 2009 and is based at University Hospital of South Manchester in Wythenshawe, and the Breast Cancer Now Research Unit, which was established in 2008, and is based in the Institute of Cancer Sciences at The University of Manchester.
The National Cancer Research Institute (NCRI) is a UK-wide partnership between the government, charity and industry which promotes co-operation in
cancer research among the 22 member organisations for the benefit of patients, the public and the scientific community.
Kidney Cancer Support Network (KCSN)
KCSN is the UK’s largest and most active patient-led kidney cancer charity. Whether you are a patient, survivor or someone you know has been diagnosed with kidney cancer, you have come to the right place to find support and information, and to be part of a caring and knowledgeable community of people: We are here to help you.
The KCSN has been supporting kidney cancer patients and carers since 2006. We are a very special type of charity. We are all cancer patients or carers to people with kidney cancer, and we provide a very special type of support because we know just what you are going through.
Join the KCSN community and be part of our network of patients and carers across the UK. Share information in our Knowledge Forum and please complete the Patient Registry to help inform research into kidney cancer.
Consumer Liaison Group (CLG)
The Consumer Liaison Group (CLG) operates to improve the quality, relevance and benefit of cancer research for patients and their families through the active involvement of patients, carers and the public.
The Group brings together people with personal experiences of cancer, including patients, carers and relatives with an active interest in research. It also works with representatives from cancer support organisations, researchers, charities, research funders and other health and research professionals.
The National Cancer Research Institute (NCRI) Clinical Studies Groups’ (CSG) portfolio maps were created to provide a visual representation of a CSG’s current research activity and are comprised of studies that are open and recruiting and those funded and in set-up. Studies that are closed to recruitment or in development without secured funding will not appear on the portfolio maps. Only studies found on the United Kingdom Clinical Research Network (UKCRN) database of studies will appear on the portfolio maps, which includes studies adopted by the National Institute for Health Research Cancer Research Network (NCRN) and studies added by the devolved nations. The maps were developed by the CSG Research Project Officers in collaboration with the NCRI CSGs and NCRN. They are updated on a monthly basis and are available to download below.
Public Involvement at Central Commissioning Facility (CCF)
Sharing your knowledge and experience of living with a health condition, or as a user of health and social care services can help us to improve the quality of the research that we fund and make it more relevant to the needs of patients and carers.
The Central Commissioning Facility (CCF) is one of the NIHR's Coordinating Centres. CCF regularly involves members of the public in two different ways:
- as reviewers of funding applications
- as members of funding panels and committees.
INVOLVE is a national advisory group that supports greater public involvement in NHS, public health and social care research
52 per cent (recent statistics show an increase to 53%) of UK cancer deaths are from the less common cancers.
Despite this, the less common cancers remain severely under represented and under-funded across all areas, including policy, services and research.
Cancer52 is an alliance of more than 50 organisations working to address this inequality and improve outcomes for patients with these highly challenging diseases.
James Lind Alliance (JLA)
The JLA is a non-profit making initiative which was established in 2004. It brings patients, carers and clinicians together to identify and prioritise the top 10 uncertainties, or 'unanswered questions', about the effects of treatments that they agree are most important.
ICPV is now an Affiliate of the JLA.
Please check the website for information, reports & newsletter.
A snapsot video of the the 2016 course is now available on YouTube VOICE2016
At the BACR/ECMC conference in July Maggie Wilcox and Mairead Mackenzie were persuaded to speak to the camera. Maggie gave a background to ICPV and our aims and objectives. While Mairead focused on her specific interests and activities. To view follow the links below.
July 2016 Conferences
ICPV members were busy this week with two conferences. The BACR/ECMC Joint Meeting on Therapeutic Interventions for Cancer Prevention was held in Bristol July18-19. The UK Breast Cancer Research Symposium was held in London from July 22-23. Click here for more information.
UK Therapeutic Cancer Prevention Network (UKTCPN)
An update from this new group was presented to the ECMC Annual Network Meeting in May 2016. Click here to download and read.
The ICPV Science for Advocates Course will be hosted by Warwick CTU from 19th - 23rd September. See the VOICE pages for more information.
The Voice, Winter 2015-2016
The latest ICPV newsletter is now available. It has reviews of members activities, meeting attended and papers published. Go to the ICPV Publications page to download.
Call for immediate change to European Paediatric Medicine Regulation to save more lives of children and teens with cancer.
A few basic changes to European Law could speed up access to newer, kinder and potentially better drugs for more children and teenagers with cancer. Click to Sign the petition
Two years on from the start pioneering TRACERx lung cancer study. Click here For the latest news and patient views on this study.
NCRI Conference 2015, Liverpool
ICPV members will be joining cancer researchers from 1-4 Nov, 2015. Click here for more information.
ICPV Summer School 2015
Qualitative Research Training Course at Warwick. Click here for a review of the session.
NCIN, Belfast, June 2015
Several ICPV members attended and spoke at this years conference. Click here for more.
AACR Conference, Philadelphia, April 2015
ICPV Member Pat Fairbrother joined US advocates at this year's conference. Read her review of the event here.
Cancer Drugs Fund
Today (19 Jan 2015) The Telegraph has published a letter from ICPV & fourteen other charities on the current CDF situation. Go to our Facebook or Twitter page for Telelgraph weblink or click below for the letter.