To Researchers and Physicians . . .
Von Hippel-Lindau Syndrome Tissue Available for Research
Research requires 1) researchers, 2) human tissue for study, and 3) a well-described project to answer key questions. Each is needed for research progress.
In 2007 the VHL Family Alliance joined the Rare Disease Initiative of the National Disease Research Interchange (NDRI), to create an collection of tissue to advance VHL research. More than 400 specimens are carefully preserved and available for research projects.
Register with NDRI for Research Projects
All researchers with a project requiring human tissue should register with NDRI. There is no cost to register. This first step is essential to the growth of the NDRI tissue bank – to assure that needed tissue is preserved, collected, and stored according to the requirements of your project.
What’s in the tissue bank collection?
Fresh procurement from surgical donors including brain/cerebellum, eyes, adrenal gland, kidney, kidney cortex, kidney medulla, liver, lung, lymph node, optic nerve, pancreas, spine, spleen, and stomach tumors. Some samples are fixed with formaldehyde in paraffin blocks, other are snap frozen blocks or slides. Medical data is available regarding the donor on most tissue samples, including the specific DNA analysis.
NDRI is more than a catalog of tissue samples; it’s also a “matching service” – matching up the tissues to the research projects. If a project has special sample preservation requirements, NDRI will do their best to meet these requirements. Write to bank@vhl.org for online access to the catalog and other details.
Obtaining specimens is easy and inexpensive
After completion of the sample acquisition forms, withdrawing samples from the collection is relatively easy. There is a small fee for processing and shipping the samples. The VHL Family Alliance and NDRI cover the costs of collecting and storing the specimens, as well as collecting medical data and genotype information from the donor. U.S. National Institutes of Health also provides support.
Studies funded by VHLFA
Research proposals submitted to VHLFA are favored when utilizing the NDRI collection of VHL tissues.
About NDRI
NDRI is experienced with tissue collection for research on rare diseases. NDRI was founded to collect tissue to facilitate research on Juvenile Diabetes. Twenty-five years later, they have documented family histories of 2550 individuals and 500 families affected by diabetes.
In less than two years, the VHL community has responded generously to our call for research tissues. To date, 35 patients have contributed tissue, and another 21 have completed paperwork in anticipation of future surgeries. Once the tissue is processed for storage, a single tumor can provide several samples for research. The existing tissues have provided more than 400 samples thus far...
NDRI
http://ndriresource.org
Advancing the procurement, preservation and distribution of human cells, tissues and organs for research and transplant. |
We are working with NDRI to promote this resource to researchers so the tissues are used in research protocols. There is a customized service, whereby NDRI can design custom systems to deliver protocol specific human biomaterials to meet the specialized needs of individual scientists.
Funded in part by the National Institutes of Health (NIH), NDRI provides biomaterials to more than 250 of the nation’s academic-based research centers including Harvard Medical School, Massachusetts Institute of Technology, Mt. Sinai School of Medicine, Stanford University, and Thomas Jefferson University. NDRI also provides tissues to government agencies and NIH grantees, the U.S. Food & Drug Administration, the U.S. Department of Agriculture, The Centers for Disease Control, and to the nation’s top pharmaceutical, biotechnology and Research & Development programs.
Frequently Asked Questions:
What hospitals does NDRI work with?
NDRI has a network throughout the country and can arrange to retrieve tissue from almost all hospitals where a patient is having surgery. If contacted at least a few days before the surgery, there is usually enough time to make all the arrangements. The NDRI phone is answered 24 hours daily, 800-222-6374.
On the permission form at the hospital, I said they could use my tissue for research. How is this different?
The tissue removed from surgical procedures are usually examined by a pathologist, who produces a written report, then the tissue is stored in a local refrigerator for some months before disposal. If a local physician writes a paper about a single case, usually this “case study” is a report of only one case – which is interesting - but we hope to promote research leading to publications on a larger number of cases.
By pooling VHL samples at NDRI, many samples are available to all researchers with approved projects – including local physicians. We want to provide access to local doctors, and also provide access to many more samples to add breadth to a research study.
As printed in the VHL Family Forum 17:1, January/February 2009. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.
|
