1. The National Cancer Research Network is part of the National Institute for Health Research CANCER GENETIC TRIALS Leicestershire, Northamptonshire and Rutland Cancer Research Network Presented by : Nafisa Patel, Research Nurse Presented on 23 rd June 2010

2. The National Cancer Research Network is part of the National Institute for Health Research History Of Trials  James Lind seen as father of clinical trials  First to introduce control groups into his experiments

3. The National Cancer Research Network is part of the National Institute for Health Research History Of Trials  He documented the fact that citrus fruits in the diet could prevent scurvy  Lind carried out trials while at sea in 1747  Scurvy patients were given the same general diet but was supplemented with vinegar, cider, oranges & lemons  Within six days those patients taking citrus fruits were fit for duty

4. The National Cancer Research Network is part of the National Institute for Health Research NCRN The National Cancer Research Network (NCRN) provides the NHS with the infrastructure to support cancer clinical trials in England. Our aim is to improve the speed, quality and integration of research with the ultimate aim of improving patient care. NCRN was established by the Department of Health in April 2001 and has already succeeded in doubling patient accrual into cancer clinical trials.

5. The National Cancer Research Network is part of the National Institute for Health Research WHAT IS A CLINICAL TRIAL?  It is a medical research study involving patients.  Aim to test whether different treatments are safe and how they work. - Treatments - Screening - Diagnosing - Controlling Symptoms

6. The National Cancer Research Network is part of the National Institute for Health Research WHY ARE CLINICAL TRIALS IMPORTANT?  Clinical trials are needed to extend knowledge and improve treatment and care, now and for the future  Are the best way to compare different approaches to preventing & treating illness  Evidence from trials is needed to know which treatment works best  Without trials, there is a risk that people could be given treatments which have no advantage, waste resources and might even be harmful

7. The National Cancer Research Network is part of the National Institute for Health Research ADVANTAGES OF BEING IN A TRIAL  Clinical trials are carefully designed to minimise the risks and maximise the benefits.  Often closer monitoring – more scans, blood tests & clinic visits than standard treatment (peace of mind)  Could get a new treatment that works, which may not be available outside the trial  Helping improve cancer care for the future  Dedicated Trial Nurse – point of contact

8. The National Cancer Research Network is part of the National Institute for Health Research NCRN GENETIC STUDIES OPEN TO RECRUITMENT  EMBRACE Epidemiological Study of BRCA1 and BRCA2 Mutation Carriers Key Inclusion Criteria: –known carriers of a BRCA1/2 mutation (affected or unaffected) –Are undergoing, have undergone or may potentially undergo testing for BRCA1 or BRCA2 mutations (affected or unaffected) –Both males and female are eligible as are women who have had prophylactic bilateral mastectomies or oophorectomies

9. The National Cancer Research Network is part of the National Institute for Health Research EMBRACE (Cont…) Key Exclusion Criteria: –under 18 years of age –those who are severely mentally ill or retarded such that they would be unable to give informed consent –those who at the local investigators discretion are not thought appropriate e.g. recent family bereavement, late stages of breast cancer, etc

10. The National Cancer Research Network is part of the National Institute for Health Research NCRN GENETIC CANCER STUDIES (Cont….)  NSCCG National Study of Colorectal Cancer Genetics. Inclusion Criteria: -Age 69 or under at diagnosis -Diagnosed with adenocarcinoma of the colon within last 5 years -Patients can have had another primary cancer and can have metastases or recurrence of disease (patients who have a diagnosis of another cancer can be accepted as long as they have a diagnosis of adenocarcinoma of colon).

11. The National Cancer Research Network is part of the National Institute for Health Research NCRN GENETIC CANCER STUDIES (Cont….)  FBCS FAMILIAL BREAST CANCER STUDY Aims: –Collection and curation of samples from breast cancer families from UK. –Identification of breast cancer susceptibility alleles by systematic mutational screening of candidate genes. –Characterisation of the penetrance, prevalence and phenotypic features of breast cancer susceptibility genes. –Detection of interactions between breast cancer susceptibility genes.

12. The National Cancer Research Network is part of the National Institute for Health Research NCRN GENETIC STUDIES AT UHL EMBRACE Epidemiological study of familial breast cancer NSCCG National Study of Colorectal Cancer Genetics CLL Familial / FCLL A Genetic Study of Chronic Lymphocytic Leukaemia and Other Lymphoproliferative Disease MAGRIT Screening procedure and gene profiling : analysis of the expression of MAGE – A3 and other genes in tumour tissueUK Genetic Prostate Cancer Study FAMILIAL TGCT Identification and molecular analyses of families with susceptibility to Testicular Germ Cell Tumour Cancer UK Genetics of Testicular Cancer Study Identification of testicular germ cell tumour susceptibility genes.

13. The National Cancer Research Network is part of the National Institute for Health Research TRIALS CURRENTLY IN WORK UP  NSECG National study of Endometrial Cancer Genetic study  IMPACT Identification of men with a genetic predisposition to prostate cancer

14. The National Cancer Research Network is part of the National Institute for Health Research CONCLUSION [1]  Only a small percentage of cancer patients are currently entered into clinical trials.  We have a responsibility to educate patients about clinical trials  If a patient is eligible for a trial he/she should be given the option of participating in the trial

15. The National Cancer Research Network is part of the National Institute for Health Research CONCLUSION [2]  Without patient participation it will not be possible to extend our current knowledge and improve treatment and cancer care  Clinical Trials must be made more accessible  We aim to do this by educating members of the public about research and how they can get involved and setting up more trials in our Hospitals.

16. The National Cancer Research Network is part of the National Institute for Health Research If you would like to find out more about any of these studies please contact Nafisa Patel at The Leicestershire, Northampton and Rutland Cancer Research Network on 0116 2586318 or via the website www.lnrcancerresearch.nhs.uk or access the NCRN website www.ukcrn.org.uk GENETIC CANCER STUDIES

17. The National Cancer Research Network is part of the National Institute for Health Research GENETIC CANCER TRIALS THANKYOU ANY QUESTIONS?