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Type of Member Affected person
Parent/guardian of affected child under 16
Relative of affected person
Friend/ carer of affected person
Medical practitioner
Other supporter

Affected Person or Parent/Guardian

Name of affected person

Gender of person affected Male
Female
Prefer not to say

Year of birth of person affected

Age at time of diagnosis

Location of cavernoma(s) if known.

Is the cavernoma symptomatic? Select one of the following Asymptomatic on discovery and still asymptomatic
Asymptomatic on discovery but no longer asymptomatic
Symptomatic on discovery and still symptomatic
Symptomatic on discovery but no longer symptomatic
Would prefer not to answer
Don’t know

Please select the level of disability from the following scale Prefer not to say
None – no change in lifestyle
Minor symptoms – no inteference in lifestyle
Minor disability – some restrictions but able to look after self
Moderate disability – significant restriction (unable to live a totally independent existence and requires some assistance)
Moderate to severe disability – unable to live independently
Severe disability – totally dependent and requires constant attention day and night

Additional Information

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Member Story

We ask all members to write a ‘Member’s Story’ describing their experience of cavernoma (directly or indirectly). This can be as long or as short as you like.

Are you interested in taking part in cavernoma research? (Select One) No
Yes
Maybe

If yes or maybe, what type of research would you take part in? (Tick all that apply)The CARE StudyOther treatment trials, for example involving a drug to reduce the risks of cavernomaQuestionnairesGeneticOther

If yes or maybe, what type of research would you take part in? (Tick all that apply)