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Contact number

Type of Member Diagnosed person
Parent/guardian of diagnosed child under 16
Relative of diagnosed person
Friend/Carer of diagnosed person
Medical practitioner
Other supporter

Diagnosed Person

Name of diagnosed person

Gender of diagnosed person Male
Female
Prefer not to say

Year of birth of person affected

Is the cavernoma symptomatic? Select one of the following(Select One)Asymptomatic on discovery and still asymptomaticAsymptomatic on discovery but no longer asymptomaticSymptomatic on discovery and still symptomaticSymptomatic on discovery but no longer symptomaticWould prefer not to answerDon’t Know

Please note ‘asymptomatic’ means ‘no symptoms’.

Cavernoma Location Frontal lobe
Parietal lobe
Occipital lobe
Cerebellum
Brainstem
Temporal lobe
Spinal cord
Other location(s)
Location(s) unknown

Have you undergone genetic testing?No – not testedYes – awaiting resultsYes – CCM1 (or KRIT1)Yes – CCM2 (or MGC4607)Yes – CCM3 (or PDCD10)Yes – familial but not CCM1, CCM2 or CCM3Yes – sporadic (not inherited)Yes – unsure of resultUnsure – whether tested or not

Additional Information

Members Story

We invite all members to share a ‘Member’s Story’ about their experience of cavernoma (directly or indirectly). This can be as long or as short as you like. Sharing a little about your experience helps us understand the support our members need and, where appropriate, share information that may be especially relevant to you. Anything you share is confidential and will not be shared without your permission.

Please can you tell us how you heard about us medical practioner
friend or family
web search
social media
our leaflet
other

If CAUK hears about a cavernoma clinical trial taking place in the UK, would you like us to let you know? No
Yes
Maybe

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