This is an important announcement from Ilene Sussman, the director of the VHL Alliance:
The VHL Alliance is delighted to announce the launch of its biggest initiative yet!
The Cancer in our Genes International Patient Databank (CGIP) is here and ready for your participation - click here for details:
The CGIP Databank is a clinical research effort that will enable us to learn more about the natural history of VHL, BHD, HLRCC, SDHB, and other forms of related syndromes. The Databank is working in a space of uncharted territory as we believe the data will provide information on how lifestyle impacts tumor growth.
•Why do siblings, with the same genetic alterations, present with different symptoms?
•Do commonly available over-the-counter medications impact tumor growth rate?
•What about diet or nutrition?
•Is there a correlation between anxiety, stress or depression and tumor progression?
•Can exercise help decrease the rate at which tumors develop and grow?
•Does pregnancy or changes in hormone levels put women at greater risk for an increase in tumor growth?
•Does oral health influence the severity of any of these syndromes?
The data gathered will also take us many steps closer to finding a cure! The greater the participation, the more we will learn and the more we will advance medical research!
Multiple steps have been taken to protect your privacy, such as data encryption and hiding the name, address, and other "identifying" information from third-parties. The removed information ("identifiers") will not be shared with anyone outside the CGIP Databank unless you give your permission to share it.
If you have any questions about the Databank, email us at [email protected] or call us at 800-767-4845 x4.
Help us find a cure! Enroll today.
Note: here are some tips that might prove helpful :
Please note that you might have to enter the date of birth as MM/DD/YYYY rather than the suggested format of MM/DD/YY.
When you register you will receive a confirmation email which has a verification link. Your email address is your user id for logging o.n
Also note that not all possible answers to a question are visible without scrolling - there are TWO RHS Scroll bars