Enrolling as a Researcher
to Obtain Tissue

VHL Family Alliance has formed a partnership with the National Disease Research Interchange (NDRI) to begin a new tissue bank. The tissue bank will store organs and tissues, including blood, urine and saliva.

NDRI is a non-profit organization funded by the National Institutes of Health with over 25 years of experience. NDRI offers the following:

• Nationwide access to human tissue from NDRI’s established network of tissue retrieval sites.
• Expert review of researcher protocols for collection, preservation and delivery of human tissues and organs by NDRI.
• Computerized matching of researcher requests with available tissue.
• Retrieval kits for selected tissues designed for efficient collection that preserve quality and viability.
• Immediate access to NDRI’s Online Biospecimen Catalog.

NDRI will register your protocol and work with you to collect tissue that meets your requirements. If you wish to prepare cell lines, for example, they can arrange quick transfer of fresh samples. Some reference cell lines are being prepared at the bank.

NDRI is available 24 hours a day at 800-222-6374. To be able to apply for VHL tissue, fill in an online application form at http://www.ndriresource.org/html/applications.htm. You will need to have the following:

• Electronic copy of your research synopsis
• Electronic copy of the resumé of the Principal Investigator
• Signed IRB letter of approval or exemption or equivalent (submitted via fax)
• Details regarding your tissue needs (i.e. donor and time constraints)
• Contact information for all co-investigators and individuals authorized to accept tissue in your laboratory
• Billing Contact and Payment Method

If you are interested in cell lines please let us know as we are looking into making them available in the future.

If you have any questions please free to contact Joyce Graff (director@vhl.org). Specific queries about your research requirements can be directed to NDRI’s Rare Disease Coordinator or John Lonsdale (bank@vhl.org).

As printed in the VHL Family Forum 15:1, January 2007. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.