About Family Web

About the Family Web Study

Why we have created this website

We want to help families to share information about the genetic diagnosis in their family. This is because family members may have the same risk as their relative.

As part of research, we are asking for the help of families who has been told they have a higher risk of bowel cancer. In these families many family members may not know about their risk. In fact, some research has shown that less than half of relatives who are at risk of bowel cancer get screening that might help them.

We think it is important that families share this knowledge because when people know about their increased risk of bowel cancer there are things they can do about it. People can reduce the chances of getting cancer in many ways, like getting screening, taking aspirin regularly or eating a healthy diet.

When people are seen by a specialist and given the news that they have an inherited increased risk of cancer they are usually given a letter to pass to their close relatives.

Most people now use a computer or a smart phone,  so we would like to find out if having their information on a secure website would help families share information about the diagnosis? Using this website is entirely free, so it won’t cost anything to use this service.

Through this research we are hoping to learn from the experiences of people living with an increased risk of bowel cancer. Then we want to try to improve the information and support that is given in the NHS.

This research has been approved by the NHS Health Research Authority and Research Ethics Committee (ref: 15/SW/0250) for recruitment through six NHS Trusts. We are very grateful for the contribution already made by all the participants to our survey and interviews which have helped us create this website.

We want to hear from people who use this website to understand how to make it even better. If you have any comments or suggestions please use the contact page or email me on info@familyweb.org.uk.

Selina Goodman, Registered Genetic Counsellor
& PhD Student at Plymouth University

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