The NHLBI established the Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC) in 2008 to facilitate access to and maximize the scientific value of NHLBI biospecimen and data collections. A main goal of the Institute is to promote the use of these scientific resources by the broader research community.
To form BioLINCC, the NHLBI brought together two previously separate repositories: the NHLBI Biologic Specimen Repository (Biorepository), which the Division of Blood Diseases and Resources had managed since 1975, and the NHLBI Data Repository, which the Division of Cardiovascular Sciences had managed since 2000.
Many of the studies in the Data Repository also had specimens in the Biorepository; however, the two NHLBI Divisions that managed the repositories could not readily share information. In 2007, NHLBI leadership developed and implemented a five-year plan to maximize the scientific value of the resources available in each repository by establishing a coordinating center. The center would link the stored specimens with their clinical data, facilitate requests for specimens, and distribute them through a publicly available online mechanism. This led to the establishment of BioLINCC in 2008.
BioLINCC contains individual-level data from more than 580,000 participants and more than 180 studies. About 50 of those studies have provided some 4 million biospecimens to BioLINCC. The NHLBI encourages early career investigators to use these resources for innovative ideas and to generate preliminary data for large grant applications. To date, about one third of BioLINCC access requests by researchers has resulted in at least one published finding, for a total of more than 800 published articles.
Research using BioLINCC resources has made key medical advancements possible. During the first 20 years of operation, the Biorepository acquired several large collections of plasma, serum, and whole blood from population studies conducted in blood donors and transfusion recipients. Research on these biospecimens have led to advancements in transfusion safety, including the evaluation of donor screening laboratory tests for viruses such as HIV, hepatitis B, and hepatitis C, along with risk estimations for transfusion-transmitted viral agents. In recent years, use of the Biorepository has expanded to include biospecimens collected from a variety of cardiovascular, pulmonary, and hematological studies supported by the NHLBI.
BioLINCC can provide biospecimens from studies in rare diseases, such as the Multicenter Hemophilia Cohort Study; studies from unique populations, such as the Honolulu Heart Program; and studies from clinical trial networks, such as the Acute Respiratory Distress Syndrome Network (ARDSNet) and the Blood and Marrow Transplant Clinical Trials Network (BMT CTN).
For more than six decades, the NHLBI has also supported data collection from participants in population studies and clinical trials. This data has often been sent to the NHLBI and placed in the Data Repository when studies have ended.
The NHLBI is particularly interested in encouraging early career investigators and investigators who were not part of the original research to use these resources. Read “How can researchers access BioLINCC data?” below for more information.
To be considered for acceptance into the Biorepository, biospecimen and data collections are reviewed for potential scientific utility and quality.
Once a study submits an application requesting the transfer of biospecimens and data to the Biorepository, NHLBI subject matter experts review the collection as part of the Biospecimen Collection Review Panel (BCRP). The reviewers base the quality of the biospecimen and data on the completeness of the collection and on the procedures used by the study to ensure the quality of the biospecimens and data.
The review process and transfer of biospecimens and data can take a minimum of 18 months to complete.
Researchers can request access to data and biospecimens in the Biorepository through the BioLINCC website.
The website features two levels of access: one with public information that is available to all users; and one that is private and available only to registered researchers. The public website provides a wealth of information about historical NHLBI clinical and epidemiologic studies that have data or biospecimens in the NHLBI repositories. Study summaries, references, and study operational documents are all included here. Visitors and researchers must register to obtain access to the private workspace and to request resources from the NHLBI Biorepository and Data Repository.