[May 16, 2013]

NDRI Awarded $5.9M by NIH for Genotype-Tissue (GTEx) Project Scale Up

The National Disease Research Interchange (NDRI) has been awarded $5,955,435 by the National Institutes of Health (NIH) for the next phase of human tissue collection for the Genotype-Tissue Expression (GTEx) project-an NIH initiative begun in 2010 to investigate how genetic variation may relate to gene expression and its correlation with disease. NDRI and its partner organizations will use the funding over the next 15 months to procure 250 organ and tissue donors for researchers. NDRI President, Bill Leinweber, said, "NDRI's contributions to the pilot phase of GTEx were critical. With leadership from our staff, Dr. John Lonsdale, vice president of research, and Jeff Thomas, vice president of donor services and sourcing, we look forward to continuing to contribute to the land-mark contributions of the GTEx project to biomedical research. I want to acknowledge the significant support from the National Cancer Institute's Biorespository and Biospecimen Research Branch and contract management services at SAIC (News - Alert)-Frederick."

Successful Pilot Phase Leads to Scale Up

GTEx's pilot phase tested the feasibility of collecting high-quality tissue from 30 to 50 tissue sites in the body. John T. Lonsdale, Ph.D. said, "The pilot phase went superbly, exceeding everyone's expectations in terms of quality of tissue and the number of donors. NDRI is well-prepared for the scale up phase of the project."

The scale up is a 30-month project scheduled in2, 15-month phases, with a goal of sourcing 700 additional donors. The $5.9M awarded to NDRI is for the first, 15-month phase, during which NDRI will work with 5 organ procurement organizations to collect 150 organ donors and 100 tissue donors. The organizations and individuals assisting NDRI with donor recovery are: Gift of Life Donor Program, Philadelphia, Pa., Richard D. Hasz, vice president of clinical services; LifeNet Health, Virginia Beach, Va., Gary Walters, senior director and general manager, research tissue franchise; Center for Organ Recover and Education, Pittsburgh, Pa., Susan Stuart, president and CEO; Washington Regional Transplant Community, Washington, D.C., Lori Brigham, president and CEO; and LifeGift, Houston, Tx., Kevin Meyer, president and CEO.

The Broad Institute at Harvard University, Cambridge, Mass., is collaborating with NIH on the research. The Broad Institute's Dr. Kristin Ardlie, co-principle investigator, remarked, "We've found over the course of the pilot project that the quality of the donor tissue collected by NDRI was extremely good. As we move in to the scale up, the next challenge will be to maintain this level of quality, while doubling the number of donors collected for the study."

The Potential to Transform Modern Medicine

Meenhard Herlyn, D.V.M., D. Sc., professor at Wistar Institute, Philadelphia, and NDRI board of directors chairman, commented, "GTEx has an ambitious program to finely analyze genetic and epigenetic variations in human cells within each of the different organs. The results, once we learn to interpret the massive amounts of data, will bring us one step closer to understanding the many subtle signatures of human organs. High-quality work by NDRI specialists is the foundation for the success of this groundbreaking effort."

Gift of Life's Richard Hasz said, "Research is a fundamental part of our mission, and organ transplantation, as it exists now, would not exist without efforts like this. GTEx provides an additional opportunity to create a legacy for donors and their families, with the ultimate goal of contributing through research for the betterment of mankind."

Ethical Legal Social Issues (ELSI) Sub-Study

A $1.1M collaborative sub-study related to donor recruitment and consent is being conducted by NDRI and Virginia Commonwealth University (VCU). The Ethical Legal and Social Issues (ELSI) team, led by VCU's Lara Siminoff, Ph.D., proposes to examine; the impact of stress and complex information on donor families' decision-making to inform the consent/authorization process; understand how variations in requesters, consent approaches, and the characteristics of family decision-makers affect understanding, recall of and willingness to donate tissues for research; and the ethical and legal issues of the request and consent process. ELSI is also testing a novel intervention designed to train tissue requesters to employ effective communication techniques when making requests for tissue. The overall goal is to develop a set of recommendations maximizing the likelihood that family decision-makers make informed donation decisions, including the potential for consent, under stressful circumstances.

About NDRI

The National Disease Research Interchange (NDRI) is the nation's leading source of human tissues, cells and organs for scientific research. By serving as the liaison between donors and the research community, NDRI is uniquely positioned to support breakthrough advances and discoveries that can affect advances in the treatment and cure of human diseases. NDRI is a not-for-profit, (501c3) corporation founded in 1980, funded in part by the National Institutes of Health (NIH), public and private foundations and organizations, and pharmaceutical corporations. For more information, please visit www.ndriresource.org.

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