The NHLBI Biospecimen and Data Repository Program: Advancing Medical Research

The NHLBI Biospecimen and Data Repository Program: Advancing Medical Research


[music playing] Every year, medical studies like yours could break new ground in treating, curing, and preventing disease. Properly collected and maintained biological specimens are at the heart
of these breakthroughs. And some of the most important specimen collections in the United States are managed
by the National Heart, Lung, and Blood Institute. The Institute’s biorepository, established in 1975 is an unparalleled body of knowledge drawn from studies of heart, lung, and blood diseases funded by the NHLBI. To learn about building a collection that can serve as a vital resource for the long-term benefit of medical science, you should download the NHLBI biorepository guide to “Building Collections for Study and Future Research.” You could help advance future research by adding to a collection that has helped the medical community safeguard our blood supply by understanding emerging pathogens, understand the mechanism of sickle cell disease and hemophilia, and identify risk factors for cardiovascular and pulmonary disease. The biorepository at the National Heart, Lung, and Blood Institute was created
to take advantage of the fact hat in many cases studies, which we fund,
by investigators from around the country and even around the world, sometimes collect specimens that are not all utilized for the original study. These specimen collections then are absorbed into our biorepository and then become available for future studies that were not part of the original plan. The Institute acquires collections with high scientific value from observational studies and clinical trials that it funds. In order for a collection to be accepted into the repository, first and foremost, it must be a unique scientific resource. Then it really becomes a matter of how the specimens and data were collected and if they were done so in a consistent and standardized manner. Our detailed guide will help you meet these exacting requirements. In 28 pages, we’ve been able to distill over 50 years worth of experience in building biospecimen collections. The guide outlines standards for collection design, documentation, specimen and data integty, informed consent, patient privacy, and much more. People think that building a biospecimen collection is very easy. How hard is it to label a tube? One tube is easy. Labeling that tube in the same way 500,000 times isn’t so easy. The biorepository provides free and secure specimen and data storage and ongoing management of collections from NHLBI-funded studies. Contributors are recognized among their peers, and their work is cited in scientific publications. The biorepository has a mission, and the mission is to provide quality biospecimens for future research. Archiving your research also honors those who volunteer for clinical trials. Without clinical volunteers, we don’t do clinical research in this country. We appreciate every contribution they make. And this is one way to extend their contribution over a much longer time and to a much larger degree. Future study investigators access your research via the institute’s BioLINCC website, currently home to more than 140 data collection sets and 4 million specimens linked to their phenotypic data. The guide will help you plan. The guide will help you build. The guide will help you monitor. To learn about creating a biospecimen collection that could advance the cause of future scientific research, download the guide from the BioLINCC website.

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