This year, we have made a special effort to encourage researchers to use the biospecimens on file at NDRI. Researchers are asked to fill out a detailed NDRI application, which requires among other things a research summary and local IRB* approval. NDRI functions as an honest broker, so that if medical history and VHL genotype are known, the information will be made available while maintaining patient confidentiality. Even if there are no samples currently on file that meet the specifications for this project, it is good to get the request on file. NDRI will watch for samples, or can try to recruit samples from their participating networks, and they will alert researchers when appropriate biomaterials become available.

Dr. Karen Block of Texas sent us the following reply: “Thank you for the information about the VHL Biobank! I have already contacted the NDRI agency and have found the website and staff to be very nice and helpful.

“More researchers should use NDRI. I find it to be a wonderful resource for researchers that would like to initiate, expand and validate in vitro findings and animal studies using human tissue.

“The addition of genotype information to the medical data would greatly facilitate research.

“I have always been in the mind set, like all of us, that resources and research should be shared as much as possible for the greater good in hopes of finding cures or preventative strategies to help families and communities live an abundant quality of life.”
-- Karen Block, Ph.D., Department of Medicine/Division of Nephrology, University of Texas Health Science Center at San Antonio

Progress!

In the 18 months since we moved our Biobank to NDRI, we have received 244 samples.

The folks at NDRI tell us that “the VHL donors are incredible! They are so willing to help, and so nice to work with -- we are delighted to be working with your group!”

We are developing cell lines for three different tumor types.

It costs money, AND we feel it is the wisest investment we can make to promote research.

As printed in the VHL Family Forum 16:2, May 2008. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.