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Non-BioLINCC Resources - External Sites and Informational Links
External Sites with NHLBI-funded Research Resources
The following data and biospecimen resources are not maintained by BioLINCC. The application, specimen search and review processes for these collections is wholly managed by their sponsors.
Atherosclerosis Risk in Communities (ARIC)An epidemiology study conducted in four U.S. communities that was designed to investigate the causes of atherosclerosis and its clinical outcomes and variation in cardiovascular risk factors, medical care, and disease by race, gender, location, and date. Available resources include biospecimens and study datasets.
Framingham Heart Study (FHS)FHS is a long-term, multi-generational study designed to identify genetic and environmental factors influencing the development of cardiovascular and other diseases. The study is a partnership between Boston University and the National Heart, Lung, and Blood Institute of the National Institutes of Health. Available resources from this study include biospecimens and study data sets.
Investigating HIV-Associated Lung Disease (INHALD)The NHLBI established the INHALD network in September of 2013 to investigate and define cellular and molecular events of HIV-associated lung diseases. Each of the eight sites is individually funded and has its own scientific aims, objectives, and protocols. Available resources include biospecimens and study datasets.
Lymphangioleiomyomatosis (LAM) RegistryA registry including six major clinical centers, LAM was established to define the natural history and identify prognostic biomarkers to help guide management and decision-making in women with LAM. Available resources include biospecimens and study datasets.
Recipient Epidemiology and Donor Evaluation Study III (REDS III) US Natural History Cohort of Zika Virus RNA Positive Blood Donors (U.S. Zika)A part of the Recipient Epidemiology and Donor Evaluation Study-III (REDS-III) initiative, this Zika virus (ZIKV) natural history study used donor NAT screening to identify and enroll asymptomatic ZIKV infected blood donors to be followed for one year. The study design enabled identification of donors early in acute infection, representing a highly informative population for characterization of laboratory parameters and incidence of clinical findings. Available resources include biospecimens ONLY.
REDS IV-P Epidemiology, Surveillance and Preparedness of the Novel SARS-CoV-2 Epidemic (RESPONSE)REDS IV-P RESPONSE was an epidemiology study that identified blood donors with COVID-19 via post-donation information and by testing plasma for SARS-CoV-2 RNA by NAT. Subjects diagnosed with COVID-19 on index donation plasma were enrolled into a longitudinal follow-up study which collected multiple samples for up to one-year post-infection. The longitudinal follow-up study also enrolled community members who reported a new positive SARS-CoV-2 NAT test in the prior 7-14 days. Available resources include biospecimens ONLY.
Women's Health Initiative (WHI)A long-term national health study funded by the National Heart, Lung, and Blood Institute of the National Institutes of Health that focuses on strategies for preventing heart disease, breast and colorectal cancer, and osteoporotic fractures in postmenopausal women. This is a biospecimen resource ONLY.
External Sites with non-NHLBI-funded Research Resources
Duke Human Heart RepositorySponsored and managed by Duke University School of Medicine and Duke Surgery, the Duke Human Heart Repository is an ongoing repository of heart tissues from failing and non-failing hearts for research. Grant writers and collaborators are invited to contact the repository director directly to use the DHHR as a tissue resource.
Heart Centre BiobankA biorepository and registry of patients with congenital and other forms of heart disease. The Heart Centre Biobank provides a resource for investigators to study the genetic and environmental causes of heart defects and other diseases through the study of DNA, tissue, and skin samples from affected patients.
NIDDK Central RepositoryA repository containing biospecimens and data sets from studies sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health. The site allows investigators to search for and request biospecimens and data sets which are housed in the repositories. NIDDK-funded studies may also find information on the processes for making submissions of biospecimens or data sets to the NIDDK through this site.
RD-ConnectA global platform created to connect databases, registries, biobanks and clinical bioinformatics for rare disease research. It is funded by the European Union and is a central resource for researches focused on rare diseases.
VivliAn independent, non-profit organization that has developed a global data-sharing and analytics platform. Their focus is on sharing individual participant-level data from completed clinical trials to serve the international research community. Thousands of studies across all therapeutic areas are available for searching and requesting on the Vivli platform.
Yale University Open Data Access Project (YODA)The YODA Project provides a means for rigorous and objective evaluation of clinical trial data to ensure that patients and physicians possess all necessary information about a drug or device when making treatment decisions. This process includes making participant-level clinical research data available for analysis by external investigators. This is a study data set resource ONLY.
NIH Data Sharing Catalog
NIH Trans-NIH BioMedical Informatics Coordinating Committee (BMIC)The NIH Trans-NIH BioMedical Informatics Coordinating Committee (BMIC) has compiled and maintains an index of NIH-supported data repositories that make data available for reuse.
Biobanking Information Resources
The following sites provide information on issues surrounding human research participants and biobanking.
International Society for Biological and Environmental RepositoriesThe International Society for Biological and Environmental Repositories is an international forum that addresses the technical, legal, ethical, and managerial issues relevant to repositories of biological and environmental specimens.
National Cancer Institute Biorepositories and Biospecimen Research Branch (BBRB)The Biorepositories and Biospecimen Research Branch (BBRB) of the National Cancer Institute strives to standardize the consistency and quality of biospecimens collected for use by investigators in research through the development and deployment of standard procurement and research standards.
University of Southern California Office for the Protection of Research Subjects (OPRS): Human Subjects Protection Program (HSPP)The Human Subjects Protection Program of the University of Southern California consists of the Office for the Protection of Research Subjects (OPRS) and four Institutional Review Boards to ensure that all USC research is in compliance with existing federal regulations, state and local laws, and institutional policies regardless of funding source and location.