Since the start of SEARCH over 20 years ago we have collected large amounts of data. Huge sample sizes are needed for genetic studies to identify alleles associated with moderate and small risk at stringent statistical significance.
How we identify and invite participants:
- Potential participants are identified and approached at the hospital clinic where they are treated (via the Cancer Research Networks). They will be invited to complete a questionnaire, and to provide a blood sample via their GP or hospital outpatients department.
- or via The Cancer Registry (information on opting out of registration is given here). The Cancer Registry no longer has the resources to send letters of invitation on our behalf. Therefore, with strict ethical and confidentiality approval, The Cancer Registry supplies patient names, addresses and GP details for our team to write to the patient’s GP with a letter to pass on, if appropriate, inviting eligible patients to take part in SEARCH.
There is no pressure to take part, also patients can change their mind and leave the study at any time with no obligation to give a reason. The decision will not affect care or treatment in the future. If they wish to leave the study, we will destroy samples and data if they ask us to.
All patient identifiable data are stored in secure locked offices in a key card controlled building and on a secure computer network hosted by the University of Cambridge School of Clinical Medicine IT department in accordance with appropriate legal requirements. Only members of the immediate research team have access to identifiable data, either paper records or electronic data.
After supplying questionnaire data, blood sample etc., we do not ask for any further active participation from participants.
We also collect data on tumour details, treatment and outcome. This can be from hospital medical records. In addition, identifiable data e.g. your name, date of birth and NHS number are supplied by us to the Public Health England (PHE) Cancer Registry to request updates to the SEARCH medical data including those who may have passed away since the start of our study, including date and cause of death. The reasons for obtaining these data are to make sure that we have up to date and correct information and to ensure that the results of the study are as accurate as possible.
Pseudoanonymised data generated by the study are analysed by the research groups within the teams of the principal investigators. Anonymised data may also be pooled with data from other groups. All presentations and publications are based on large sets of anonymised data.
Withdrawal from the Study: If you have taken part in SEARCH and wish to withdraw consent from contacting you with any queries, obtaining further data from health or PHE data, or using any of your data at all (complete withdrawal from the study) please contact the SEARCH team on 01223 740148 or by email to The SEARCH Team. You don’t have to give a reason and your treatment will not be affected in any way.