BCNS Study- Adult

Survey of Basal Cell Carcinoma Nevus Syndrome (BCCNS) Gorlin-Goltz Syndrome (GGS) Individuals

2% of survey complete.

This is a revised survey. If you participated in our previous survey, we greatly appreciate your continued contribution. This revised survey has taken into account your feedback and tailored questions with the goal of better understanding basal cell carcinoma nevus syndrome (BCCNS), which is also known as Gorlin-Goltz Syndrome.

If you are unsure of whether or not you have BCCNS, here are characteristics common to those who have BCCNS:

- Multiple skin lesions (Basal Cell Carcinomas)

- Enlarged head circumference

- Joined toes and/or fingers

- Jaw cysts

- Pits/ Indentations in soles of feet or palms of hands

- Medulloblostoma

Please see the photographs below.

Please visit this website to learn more about BCCNS: http://www.gorlinsyndrome.org/

By providing detail of your own experience, we hope to address which symptoms are associated with BCCNS and which therapies may be helpful in treating this disease. While this survey is thorough, feel free to answer questions to the best of your ability and return to the survey as often as needed in order to complete it on your own time. Your responses will be saved and you can log back in and continue the survey at any time. Data will be collected monthly. During each month you can log back in and note if there is no change or any changes in your previous answers. This type of data collected over time is valuable for understanding progression of disease and therapeutic effects.

Thank you for your interest in this study!

Question Title