APPENDIX 16
Memorandum submitted by the United Kingdom
Co-ordinating Committee on Cancer Research
1. INTRODUCTION
1.1 The United Kingdom Co-ordinating Committee
on Cancer Research (UKCCCR) is a body constituted by the major
cancer research funders to facilitate co-ordination primarily
of their large and costly clinical trials. The full members (who
provide the large majority of the costs) are the Cancer Research
Campaign, the Imperial Cancer Research Fund, the Leukaemia Research
Fund and the Medical Research Council. Associate Members are Breakthrough
Breast Cancer, The Institute of Cancer Research, Ludwig Institute
for Cancer Research, Marie Curie Cancer Care and Tenovus. The
following have "observer" status: The Department of
Health, The Scottish Office Department of Health, The Welsh Office
Department of Health and Social Services and The Academy of the
Medical Royal Colleges.
1.2 Traditionally the UKCCCR has had an
independent Chairman who has been an eminent medico-academic from
a non-cancer background. The post has recently been occupied by
Sir Raymond Hoffenberg (1987-1991), Dame Margaret Turner Warwick
(1992-1997) and Sir William Asscher (1997-present). The current
Terms of Reference of the UKCCCR are:
— to provide a forum for the co-ordination
of research activities and for the exchange of views and information
about the policies, portfolios, priorities and plans of the sponsors,
taking due account of the activities of the Health Departments
and other relevant bodies;
— to recommend to the sponsors proposals
for the co-ordination of policies;
— to advise the sponsors on issues
of relevance to the conduct of cancer research and on any other
matters which may be put to the Committee, and to pass on information
to the Health Departments and other relevant bodies as appropriate;
— to facilitate national and international
cancer clinical trials and other multi-centre studies in the UK.
1.3 It is important to note, (and particularly
in terms of the current inquiry) that the UKCCCR does not have
separate legal identity and acts purely as an agent of the funding
bodies. The views of the individual funding bodies upon the issues
raised by the inquiry have been sought and will be submitted by
them. This memorandum is therefore confined to an account of the
current activities of the UKCCCR.
ACTIVITIES OF
THE UKCCCR
2. In the past
2.1 Until recently, the activities of the UKCCCR
could be divided into three main categories: Providing a forum
for research ideas generation; clinical trials co-ordination;
and research programme administration.
2.2 Until 1999, the UKCCCR organised five
tumour-site specific subcommittees (Breast Cancer, Colorectal
Cancer, Gynaecological Cancer, Lymphoma and Melanoma) together
with two ad hoc groups (biomarkers and new technologies). These
groups which meet twice yearly bring together clinicians and laboratory
scientists from around the UK with the objective of generating
new research proposals (almost exclusively in the area of clinical
trials of cancer screening and treatment) which can then go forward
for competitive funding. For larger proposals, the UKCCCR would,
through discussion with representatives of the individual funding
bodies, co-ordinate attempts to provide joint funding from two
or more organisations. A number of very large national multicentre
clinical trials have been successfully organised via this mechanism.
2.3 For a number of clinical trials the
UKCCCR has provided ongoing co-ordination of trials supervision
on behalf of the funding bodies. Although the day to day management
of the trial has been via the principal investigators and one
of the cancer trials offices, continued supervision of funding
renewals together with organisation of the trial management group
and the independent data monitoring committee has been via the
UKCCCR Secretariat.
2.4 Two large research programmes developed
by others have been supervised by the UKCCCR over the past several
years. The UK Childhood Cancer Study is a very large epidemiological
investigation into the causes of childhood cancer in England,
Wales and Scotland. Nine regions have been funded to a total of
over £11.5 million contributed to by all the major cancer
charities, the MRC, and the Department of Health together with
the electricity and nuclear industries. Results of this Study
have just begun to be published. The UKCCCR Radiation Research
Programmes have awarded grants over the last eight years for radiobiological
studies aimed at understanding the effects of ionising radiation
at dose levels likely to be encountered by nuclear industry workers.
Both of these research programmes are in their final years and
there are no plans to extend them.
3. THE PRESENT
3.1 It was decided during 1999 that the
major responsibilities of the UKCCCR should be the organisation
of a Clinical Cancer Network. This would represent an extension
of the existing site-specific subcommittees to a total of 14 Network
Groups. This has now been achieved and these Groups will form
an important national resource for the generation of new ideas
for clinical trials through their regular meetings and also via
the organisation of much larger National Meetings in their subject
areas. Details of the Network Groups are contained in the July
1999 Progress Report. A copy of this forms the Annex of this Memorandum[16]At
the same time it was decided that the UKCCCR's role in the administration
of ongoing trials should largely revert to the funding bodies
acting individually or in various ad hoc combinations.
3.2 The UKCCCR receives strong feedback
from clinical members of its Network Groups, that conduct of their
clinical research is inhibited by the low NHS service base and
this is viewed as an additional hurdle not present in the USA
or much of Europe. Reports of difficulties in obtaining service
support and excess treatment costs are widespread and this can
lead to funds coming via different routes for different collaborating
centres within the same study.
4. THE ROLE
OF UKCCCR IN
CO-ORDINATION
4.1 Despite the broad terms of reference
for the UKCCCR, development of its co-ordinating role in the widest
sense has been limited. The co-ordination of basic research has
not been a primary focus for the UKCCCR, since the funding bodies
have had their own high quality portfolios reviewed and supported
by their own funding schemes with necessary interaction taking
place at researcher level or in other ways.
4.2 Where the UKCCCR has made a clear impact
has been in relation to clinical trials research, since this necessarily
requires a co-ordinated approach, both during the development
stage of a trial and to ensure that sufficient patients are entered
into a recognised worthwhile trial in a timely way. In this area
the UKCCCR has been successful as a focus for active clinical
researchers in generating, through its site-specific sub-committees,
now groups, high quality trials protocols. The overwhelming majority
of these trials have secured funding through one or more of the
funding bodies.
4.3 One of the original aims of the UKCCCR
was to ensure that the very largest multi-centre clinical trials,
that were perhaps too big for a single funding agency, secured
co-funding and went ahead. Whilst the UKCCCR has undoubtedly helped
to ensure that all of these large trials have gone ahead, it has
been less successful in speeding up the review process. There
are a number of reasons for this, one being that individual organisations
have, for quite legitimate reasons, needed to carry out their
own independent peer-review of a particular protocol and required
it to compete for funding against their other priorities.
March 2000
16 Not printed. Back
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