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Getting involved as a patient

Participating in the UKGPCS study involves signing the consent form, completing a form giving details of your medical history, completing a family history questionnaire and providing us with a saliva sample. You will not have to visit the ICR to participate, and taking part in the study will not affect your medical care or treatment.

Are you eligible to take part?

You are eligible to take part in the study if you fit into at least one of the following groups:

  • You and a first, second or third degree relative have prostate cancer and at least one of you were diagnosed at 65 years of age or under.
  • There are three or more cases of prostate cancer on one side of your family.
  • You are a prostate cancer patient at the Royal Marsden NHS Foundation Trust.
  • You are taking part in the CyberKnife prostate SBRT studies.

Being referred to the study

Your consultant or research nurse may ask you if you would like to take part in the study at your hospital appointment. They will explain the study to you and give you a patient information sheet which outlines how the study works. If you are interested in taking part, you will be asked to read and sign the consent form and complete the Medical Details form and the Family History Questionnaire.  You will be able to take the forms home to complete and bring them back at your next appointment.

If you consent to participate in the study your consultant or research nurse will send us your completed forms, together with your saliva sample, which will be taken at the hospital/home.

Alternatively, if you think you are eligible to take part, you can refer yourself by contacting us direct. Our contact details are at the foot of the page, UK Genetic Prostate Cancer Study.

(Disclaimer: We are happy to be contacted by email, but please be aware that email is not considered a secure medium for confidential information).

If you decide to refer yourself we ask that you let your hospital consultant know as they will be asked to provide details of your cancer and its treatment for our research.

What happens next?

We are very happy to discuss any of your queries on the telephone so please do ring us if you have any specific queries about filling in the study forms.

How to involve other members of your family

If you have other family members who have a positive diagnosis of prostate cancer we will ask you if they would consider taking part, and there is space on the last page of the family history form to write in the contact details of any relatives that would like to take part.

We would only ever contact other members of your family with your permission.

We will request some details from your consultant

Once you have agreed to take part in the study and signed the consent form, your research nurse or consultant will send us some more information specific to your prostate cancer and treatment. This will enable us in the future to see whether any of our genetic findings are linked to clinical factors such as PSA level or cancer grade.

We may ask for a sample of your cancer tissue

We may ask for a sample of your cancer tissue taken during your original prostate biopsy or operation. We will contact your hospital directly for this and we would only do this with your written permission on the consent forms.

Optional lifestyle and environment questionnaire

You can also choose to fill in an optional questionnaire about environmental factors. Because the causes of prostate cancer are not known, our collaborator Professor Kenneth Muir at the University of Manchester, is collecting information about the lifestyle and environment of men with and without prostate cancer to see if there is any correlation between lifestyle factors and prostate cancer risk.

If you tick the box on the consent form to fill in the epidemiological (interactions of environment) questionnaire, you will be given the questionnaire, to complete, along with a pre-paid envelope for posting it directly to us.

You will be asked to fill in information about your occupation, exposure to chemicals at work, hormones, smoking, sexual activity, sun exposure, exercise, general health, x-rays and medication, body shape, and diet. You do not have to answer any of the questions that you do not feel comfortable answering, and all of your answers will be anonymised before being sent to Professor Ken Muir’s team.

Future contact from us

You may not wish to be contacted by us once you have completed the study, and you can let us know this on the consent form which asks whether you are willing to be contacted in future.

If you give permission for us to contact you in the future, we may write to you:

(i) to ask whether your family history has changed at all since you filled in your forms. In order to keep the study updated it would be very helpful if you could inform us if there is a change in your family history or anyone in your family should develop any type of cancer.

(ii) if we find any relevant results in your sample, to ask if you would like to know what we have found. We would offer you the opportunity to discuss the relevance of these results for you and your family with one of our cancer genetics specialists.