Help us Learn! We ask that people with VHL worldwide fill out our research questionnaire.

Click to download

resquest.pdf

The VHLFA Research Questionnaire has three major goals:

1. To gather statistics about our community to help in raising awareness and refining the screening protocol.
2. To collect information on some of the family questions not yet being addressed by medical research.
3. To record the state of someone's health and VHL history at the time they donate tumor tissue to the bank. But we welcome your information, whether or not you are donating tissue at this time.

There are still many open questions about when screening should begin, and what is the benefit of screening versus the cost of the scans and the emotional cost of keeping up with the scans. We cannot learn this without your help.

There are also a number of questions not currently being studied by the medical projects, but which are important to families. For example, there is still no medical research project on epididymal cystadenomas or broad ligament cysts. Medical researchers believe they are not important because they do not metastasize. While that is true, we are hearing lots of stories of overtreatment of these benign lesions, mostly because they are not well understood and are frequently misdiagnosed as more dangerous tumors. We need your help to learn more about the frequency of these cystadenomas, any problems they may have caused you, and your experiences with diagnosis and treatment. With your help, we can compile some interesting information which might demonstrate the need for a medical study.

Privacy and Confidentiality

The information collected is held in a secure database in the VHL Family Alliance office. Personal information (name, address, etc.) is kept separate from the research details, to ensure privacy. Personal details are never released to researchers. Summary reports from this data may be released from time to time in order to spur research.

If there is an approved project in which you might wish to participate, VHLFA will notify you and give you the option to contact the research team. Your name will not be released to any researcher without your express permission.

Where to send it

Please print out the Research Questionnaire, fill it out, and send it back to

Research Coordinator
VHL Family Alliance
2001 Beacon Street, Suite 208
Boston, MA 02135-7787

Please call or write with any questions, 1-800-767-4845, ext. 4

Thank you!	Click to download
	resquest.pdf

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As printed in the VHL Family Forum 15:2, May 2007. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.

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