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Patients with Gorlin Syndrome

CART-WHEEL rare cancer database is inviting people from all over the world to submit information about their particular tumor so that more research can be done in these understudied rare tumors.

 

Patients can easily register and fill out the user-friendly online questionnaire which asks them about their tumor type, treatment received and aspects of family history.

 

Patients with Gorlin syndrome (nevoid basal cell carcinoma syndrome) have a predisposition to develop a particular type of skin cancer called basal cell carcinoma, from childhood and early adulthood onwards. Other types of tumors can also occur in Gorlin syndrome, such as medulloblastoma (brain tumor) and benign ovarian fibroma tumors.

 

A support group led by an Australian Gorlin syndrome patient serves as a vital voice for this cohort of patients with limited treatment options.

 

CART-WHEEL.org will coordinate data collection for patients with this rare syndrome with the aim of facilitating use of these data in research studies.

 

If you are diagnosed with Gorlin syndrome and want to be part of important studies, please join CART-WHEEL and fill out the online questionnaire. In order for us to include your information for this project we also require your written consent.