1. Welcome

Survey and Registry of Basal Cell Carcinoma Nevus Syndrome (BCCNS)
Gorlin Syndrome (GS) Individuals

This survey has been created to collect comprehensive data on individuals with BCCNS with the goal of helping the healthcare community better understand this condition and aim to further shape the service delivery for future care.  The information gathered will be used to improve advocacy efforts and potentially accelerate the development of new treatments for individuals affected by Gorlin Syndrome.  By participating in this registry and providing these valuable insights, you are making a significant and important contribution.

If you have already been registered on our database you will be asked a series of questions about your medical history and experience.   If you are however new to our register you will be given the choice to leave your contact details for us to contact you to enable us to add you to our database.  Please bear in mind the more information we can gain the better we can use this to understand, improve, review your treatment and experience of services already provided.  Please answer each question as completely and accurately as possible.

This questionnaire will take around 15 minutes to complete.  Please fill in the relevant answers as best as you can by either ticking (✔) the selection or filling in the blank boxes.  Should you have any queries about this questionnaire please contact louise.lawrence@christie.nhs.uk.  We thank you for your valued participation.

* 1. Can you provide the unique code that was sent with your paper questionnaire?

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20% of survey complete.

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