See below a list of frequently asked questions (FAQs).
- What is the study for?
- Who is eligible to take part?
- How do we identify and invite potential participants?
- How do potential participants tell us they do not wish to be approached?
- Who will benefit from the research?
- What do participants have to do?
- Where will data and samples be stored?
- What about confidentiality?
- Will there be any results from the blood tests?
- If participants have any questions, who can they ask?
- Who is carrying out the study?
- Are there any legal implications?
- What if I no longer wish to be part of the study or prefer not to be part of wider data linkage studies?
- How can we help ?
1. What is the study for?
We are trying to find out more about the causes of cancer so that we can find ways to prevent it. In particular we are trying to find genes that increase the risk of cancer or are related to the effectiveness of treatment for the disease. One way to do this is to compare family history and DNA from blood samples in people who have had cancer with DNA from the general population.
2. Who is eligible to take part?
Only patients who are invited, having been identified through participating cancer registries and cancer research networks, are eligible to take part in these studies.
3. How do we identify and invite potential participants?
- There is a network of hospitals across England, Wales and Scotland set up to invite patients eligible for the SEARCH STUDY to take part.
- In England, we also identify potential participants via Public Health England’s National Cancer Registration and Analysis Service (NCRAS). More details are given here: https://ccge.medschl.cam.ac.uk/search-study/search-recruitment-process/
4. How do potential participants tell us they do not wish to be approached?
Potential participants who do not wish to be approached to take part in the SEARCH Study can register their wishes by contacting the SEARCH team.
5. Who will benefit from the research?
This research is unlikely to benefit participants directly. We hope the results of the research will help patients in the future.
6. What do participants have to do?
We ask participants to fill in a simple but comprehensive questionnaire about their family and medical history (this should take about half an hour). Our team can help, if needed, on the telephone. We also ask for a blood sample (30ml or 1 fl.oz.) – just like the one which is taken for ordinary blood tests. It may be possible for this to be done by the GP/practice nurse or at a hospital outpatients appointment. We also ask for consent to obtain medical records and pathology material from any operation. This will help us to determine whether genes increase the risk of specific types of cancer.
7. Where will data and samples be stored?
All data and samples are stored at Strangeways Research Laboratory. Data will be stored in accordance with the 2018 General Data Protection Regulation (GDPR). Data and samples may be stored for many years while genetic analysis takes place and will then be destroyed.
8. What about confidentiality?
All the information given to us is completely confidential. We will not pass it to anyone, not even other members of the family, or participants’ doctors, without permission. Other members of the family will not be contacted as part of this study (we may try to verify details of any cancers in relatives using death certificates or national cancer records). Participants may, however, wish to discuss the implications of the study with other family members.
We may request details from central UK NHS bodies such as NHS Digital, Public Health England and/or the Office of National Statistics on the participant’s health status. The reason for this is to make sure we have up to date and correct information, and to ensure the results of the study are as accurate as possible. In order to do this we would have to pass on some information (such as date of birth, name, NHS number and address) only so they can match this to their records and relay the relevant data back to us.
9. Will there be any results from the blood tests?
DNA will be extracted from blood samples and used to look for genes which might be linked to cancer. This may take several years. Since most cases of cancer are probably not the result of genetic differences, we expect most samples to be entirely normal. However, it is possible that we find that a participant carries a gene that causes a high risk of cancer. This may have implications for other family members because it may indicate an increased risk of developing cancer.
The overall results of our analyses (but not of course any results on individuals) will be published in medical journals.
10. If patients have any questions, who can they ask?
The SEARCH Team will be pleased to answer any questions. We can be reached by telephone on (01223) 740148 or you can e-mail The SEARCH Team.
11. Who is carrying out the study?
The research is funded by Cancer Research UK and carried out at the Centre for Cancer Genetic Epidemiology, University of Cambridge. The doctors and scientists responsible for the study and for the storage of your blood sample and information on behalf of the University of Cambridge are Professor Douglas Easton and Professor Paul Pharoah. Other members of the team are Mitul Shah and Valerie Rhenius. We may from time to time collaborate with other research groups, if we judge that their resources will benefit the research. Any data shared in this way will be anonymised and all such arrangements will be subject to the agreement of our research team and of an independent Research Ethics Committee.
12. Are there any legal implications?
Samples from participants will be used for academic (non-commercial) research purposes only. In a legal sense it will be treated as a “gift” to Cambridge University, and participants will have no claim over the sample should the results of this research lead to commercial development.
13. What if I no longer wish to be part of the study or prefer not to be part of wider data linkage studies?
SEARCH participants who no longer wish to be part of the study or prefer not to be part of wider data linkage studies can register their wishes by contacting the SEARCH team.
14. How can we help?
If, however, you prefer specifically to support the SEARCH study, please send cheques (£ sterling from a UK bank) made out to “Cambridge University” to Professor Paul Pharoah, SEARCH Study, Department of Oncology, Cambridge University, Strangeways Research Laboratory, Worts Causeway, Cambridge CB1 8RN, UK.