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The National Disease Research Interchange and Collaborators on: What Are the Major Hurdles to the Recovery of Human Tissue to Advance Research?

Astandardized method to reduce analytic variables for the collection of human tissue is essential for investigators seeking to advance findings from basic disease research to new therapies for patients. When designing experiments involving human tissue samples, researchers must define specific donor criteria and preservation requirements useful for their analysis. Access to tissue from donors who fit specific criteria can be problematic if the donor profile or disease is not widespread. The biggest challenge facing human tissue research is identifying a significant number of donors who match specific eligibility criteria to add value to studies seeking cures or treatments for devastating diseases. Both diseased and nondiseased tissues are needed for comparison to understand the mechanisms of dysfunction, to seek potential biomarkers, or to evaluate potential therapies for disorders. The key to mitigating the challenge facing human tissue research is establishing a wide donor screening and recovery network to maximize donation opportunities that meet donor eligibility requirements and tissue collection parameters. The National Disease Research Interchange (NDRI) has developed several novel approaches to serve these specific scientific needs. To support uniform human tissue collection programs, NDRI has become accredited by the College of American Pathologists as a biorepository to enhance the reproducibility of our recovery network. One method that NDRI uses to capture these very important human biospecimens is partnerships with organ procurement organizations (OPOs) for the screening and recovery of donors throughout the United States. The landscape of organ and tissue donation for transplant has changed significantly in the past 35 years, which has led to great opportunities for human tissue research efforts. Following the National Organ and Transplant Act passed by Congress in 1984, the Organ Procurement Transplantation Network was established to manage the organ matching process at 58 OPOs throughout the country. Currently, about 1.4 million deaths that occur in acute clinical care settings in the United States are referred to these OPOs for consideration for transplant. As not all organs and tissues from these donors are eligible for transplant, there are opportunities for donation of tissue for research through the same mechanism. The NDRI, a 501(c)3 not-for-profit, uses the extensive screening and authorization in place at the OPOs to provide high-quality, highly annotated, nondiseased, and diseased tissues for research. This recovery model has allowed NDRI to contribute to multiple large-scale NIH projects, including the GenotypeTissue Expression (GTEx) project, through which NDRI collected 88,000 highly annotated tissue samples over 6 years. NDRI has established partnerships with a network of tissue source sites (TSSs) that include tissue banks, eye banks, hospitals, and recovery personnel, in addition to the OPOs, which all contribute to enhance the donor screening and recovery for tissues and organs for research. NDRI has established training programs and screening tools that have added to the success of these partnerships for the recovery of tissues for research. Using this nationwide network, essential for the identification and recovery of tissues needed for research, NDRI has supported the establishment of biobanks or assisted in addressing gaps within existing biorepositories, which are a critical resource for the scientific community. Another approach is used by researchers studying rare diseases, by which a different model of donor identification and tissue collection is often necessary. There are more than 7000 rare diseases, defined as a disease that afflicts less than 200,000 patients a year in the United States. Studies evaluating treatments for these ‘‘orphan’’ diseases face the challenge of having access to human tissue from a very small segment of the population. Patient registries and education about the importance of donation for research are key to obtaining these valuable tissue samples. Patient registries allow contact with the donor and next of kin throughout life. The advantage to this approach is the opportunity to