Research and Surveys

Gorlin Syndrome (BCCNS) Patient Survey

You are invited to participate in a research study titled ‘Gorlin Syndrome Patient Study’. 


This study is being conducted by Macmillan and Greater Manchester Cancer Skin Board. The purpose of this study is to determine factors which influence the treatment of Gorlin Syndrome as well as your experience of any service provided.  Your participation in the survey will help shape service delivery for future care.  While you may not experience any direct benefits from participation, information collected in this study may benefit in the future by better understanding Gorlin and the best access to services required.


We estimate that it will take about 15 minutes of your time to complete the questionnaire. Your participation in this survey is voluntary. You may decline to answer any question and you have the right to withdraw from participation at any time.  This survey is initially reviewing the services provided within the UK, however if you feel that your international experience may be of some benefit we would welcome your opinions.

The questions in this survey do not ask you to reveal any personally identifying information.  This survey has been ethically approved on: IRAS project ID 208806.  By completing and submitting this survey, you are indicating your consent to participate in the study. Your participation is appreciated. We will base our first analytical report from answers provided by 1 July 2017, however this survey is open for a year, therefore all answers over this time will be reviewed.


With many thanks, Macmillan, Greater Manchester Cancer Skin Board and Gorlin Syndrome Community.


Access to the on-line survey 


NB - kindly note that some individuals have had hard copies of the survey and will have received a code which can be entered on the survey. For those who do not have a code kindly indicate no when completing the online survey. It is also worth noting that parents can complete on behalf of a child affected by the condition. Thank you.  


 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
Gorlin Syndrome Group is Registered Charity in the UK - No 1096361 
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