The FAP Gene Support Group

(Familial Adenomatous Polyposis)

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Survey Invitation October 2016

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The FAP Gene Support Group are once again pleased to announce that they have been invited to promote an online survey for patients with FAP

In 2014 we were approached by Selina Goodman a genetic counsellor for our views of what kind of research would benefit patients with FAP.

At the time we suggested that the testing of children was one of our most discussed items. This followed a talk by Professor Alison Metcalfe on her own Family Talk Project in 2009. Since then Selina has had several conversations with Alison but in the end decided to keep her research broader, looking to find out the opinions of many people who live with the risk of cancer so that they can guide how to best improve NHS support to families. She is therefore inviting you to take part in her research:

"I am a genetic counsellor but I have given up my job to do a PhD to try and improve the way families are supported by the NHS. I need to hear your views and experiences of how you found out about FAP? I would like to know."

· What information you were given at the time?
· What other information and support you might like?
· How you think information should be provided (leaflets, email, via websites)?

"Please fill in this short anonymous survey to help me find out your views? Many thanks, Selina Goodman"

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