Children's Cancer and Leukaemia Group
Biological studies
UKCCSG Biological Studies Update
March 2004 - Issue: 1

Introduction

Welcome to the first issue of the Biological Studies Update.

This update will be issued every two months, in between issues of the biological Studies Newsletter. Dates for future issues are as follows:-

Newsletter Issue 10 Submission deadline 23 April 2004 Issue 30 April
Update Issue 2 Submission deadline 23 June 2004 Issue 30 June
Update Issue 3 Submission deadline 20 August 2004 Issue 27 August
Newsletter Issue 11 Submission deadline 22 October 2004 Issue 29 October
Update Issue 4 Submission deadline 10 December 2004 Issue 17 December

Bitter Sweet

We are delighted for Ann now that her plans to adopt 2 children have been confirmed. However, we are saddened that we will be losing Ann’s expertise and attention to detail that ha ve d been so important in setting up, and running and managing an extremely robust and UK ground breaking Tissue Bank. In achieving our virtual tissue bank there have been considerable, logistical, ethical and practical barriers to overcome. That the tumour bank is in such good shape is very much a testament to Ann’s dedication to this role. As a group we should be very proud that we still hold the only National Tumour Bank in the UK and have managed to do this on a very small budget.

Cover Arrangements for Ann’s leave

Sue Thornton will continue to receive and process applications for biological studies, and will additionally co-ordinate the newsletter and updates, process the Biological Studies Handbook, deal with meeting administration and act as liaison with the webmaster regarding the Biological Studies website.

Helen Middleton will continue to deal with the tumour bank registrations and database, and will additionally deal with tumour bank payments.

Lisa Duffin will take over responsibility for sample identification and release.

Sue Ablett will handle MREC applications.

Many thanks to Ann for her contribution to Biological Studies over the past six and a half years and we wish her much success and happiness in her new role.

Tissue Registration Update

There are now 1278 specimens registered with appropriate consent in place (either archival or with a copy of the consent form in the Data Centre).

Biological Studies Group – Junior Members

We welcome Matthew Murray, Grid Trainee from the Royal London who has now joined the Biological Studies Working Group as a Junior Member.

We are still looking for a Junior Scientist to join the Biological Studies Working Group - anyone interested should contact Richard Grundy. Can you please spread the word widely through colleagues to help fill this important position?

Ethical Approval for the use of archived tumour tissue for research in approved projects

A big thank to all of the centres who have now obtained LREC approval for the use of archived tumours in research. The definition of ‘archival tumour’ is that is of any tissue stored in a centre prior to the date on which they obtained LREC approval for tumour banking. Eleven centres have now obtained the relevant consent from LREC. These are listed below.

Birmingham
Bristol – Bristol and Frenchay
Cambridge
Cardiff
Leeds (St James’s and Royal Leeds Infirmary)
Liverpool (Alder Hey and the Walton Centre)
Newcastle (Royal Victoria Infirmary and Royal General Infirmary)
Royal Marsden Hospital
Sheffield
Southampton Hospital

Ideally all centres will have approval in the near future.

Consent for tumour banking for biological Studies

Presently, most centres fax/send a copy of the parental consent for tumour banking to Leicester. However, this is somewhat anomalous in that a similar request is not made for entry to clinical trials. Furthermore, increasingly biological studies are an integral part of the clinical trial/strategy. Clearly if consent has been obtained for entry into the clinical trial then consent is also obtained for biological studies attached to that trial. However, we would continue to urge you to obtain consent for tumour banking as this provides a more open ended consent for undertaking biological studies over and above those in the clinical study. In order to ease these differences we will be changing the tissue registration forms to include a box to be ticked when consent has been obtained. Clearly this will require an increased liaison between the Data Managers/Research Nurse/whomever and the Pathology Department in order to determine the status of any sample stored in the Pathology Lab. We hope that this will streamline the process rather than cause more difficulties but clearly would appreciate some feed back on these issues.

Website

We are very keen to receive applications from non-members of the UKCCSG. We are therefore amending the website so that all things biological are accessible to non-members. There will be some member only information on the biological website such as minutes but most of the information will be widely available.

New method of payments for samples banked in the UKCCSG tumour bank

The CRUK have agreed to our request for an annualised lump sum payment to each centre to facilitate tumour banking. This will be given on a yearly basis for 3 years and review will be carried out on the 2 nd year as detailed in the scientific report. We are hoping to start this process in July of this year when we get the new grant from the CRUK. We hope that this lump sum payment will improve tumour banking by helping to provide the infrastructure by which this can happen more reliably and robustly. Can you please think about the mechanisms by which your centre wishes to receive the centre funding for tumour banking so that there are clear lines of accountability for this funding in each centre. We will be in touch with all centres with more detailed requests for information (i.e. account details etc.)

ADVANCE WARNING – DATES FOR YOUR DIARY

  • This years scientific meeting will be held at The Royal Marsden Hospital, F u lha m Roa d on 2 nd- 3 rd December. More to follow .

NEXT EDITION ... Issue 10 of the Newsletter will be sent out on 30 April. If you have any items that you would like to include, please send them to Sue Thornton by 23 rd April (st22@le.ac.uk).

Chair Biological Studies Committee

Dr Richard Grundy
Birmingham Children’s Hospital
Tel: 0121 333 8243
Fax: 0121 333 8241
e-mail: richard.grundy@nottingham.ac.uk