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The National Heart, Lung, and Blood Institute (NHLBI), within the United States’ National Institutes of Health (NIH), established the Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC) in 2008 to develop the infrastructure needed to link the contents of the NHLBI Biorepository and the NHLBI Data Repository, and to promote the utilization of these scientific resources by the broader research community. Program utilization metrics were developed to measure the impact of BioLINCC on Biorepository access by researchers, including visibility, program efficiency, user characteristics, scientific impact, and research types. Input data elements were defined and are continually populated as requests move through the process of initiation through fulfillment and publication. This paper reviews the elements of the tracking metrics which were developed for BioLINCC and reports the results for the first six on-line years of the program.
The Hispanic Community Health Study / Study of Latinos (HCHS/SOL) is a multi-center epidemiologic study in Hispanic/Latino populations to determine the role of acculturation in the prevalence and development of disease, and to identify risk factors playing a protective or harmful role in Hispanics/Latinos. The study is sponsored by the National Heart, Lung, and Blood Institute (NHLBI) and six other institutes, centers, and offices of the National Institutes of Health (NIH) contributed to the first phase of the project.
The Lung HIV goal is to facilitate the data and specimen collection efforts of eight individual HIV and pulmonary studies that operate under the direction of the NHLBI. The Lung HIV study will build on existing studies to facilitate the start-up of new projects to further the understanding of the relationship between pulmonary disease and HIV infection. There is only one clinical trial being performed in this network at Ohio State University and it will be reported here.
The MACS/WIHS Combined Cohort Study (MWCCS) is a collaborative research effort that aims to understand and reduce the impact of chronic health conditions—including heart, lung, blood, and sleep (HLBS) disorders—that affect people living with HIV. MWCCS integrates two longstanding, longitudinal studies: the Multicenter AIDS Cohort Study (MACS) and the Women’s Interagency HIV Study (WIHS). The MACS began in 1984 as a longitudinal study of HIV-1 infection among gay and bisexual men in the United States and has enrolled more than 7,300 study participants at four clinical research sites, who were evaluated every six months; visit protocols included in-depth interviews, physical examinations, and collection of biological specimens for testing and repository storage. The WIHS began in 1993 as a multicenter longitudinal study to investigate the progression of HIV disease in women and has enrolled nearly 5,000 women (including HIV-positive women and a demographically similar group of HIV-negative women) at six clinical research sites. MACS and WIHS combined to form MWCCS in 2019.
Today, the MWCCS includes more than 4,000 active participants both with and without HIV and continues to recruit new participants, with study locations in Alabama, California, Georgia, Illinois, Maryland, New York, North Carolina, Ohio, Pennsylvania, and Washington, DC. The effort will study high-priority research on HIV outcomes, including prevalence, pathology, etiology, mechanisms, treatment, and prevention of morbidity and mortality related to HIV, its treatment, and the intersection of HIV and aging and the contextual factors common in the lives of those with HIV. Major areas of research focus include cardiovascular and pulmonary health, aging, cancer, neuropsychological and psychosocial health, and health disparities.
This fasting and refeeding pilot study was registered in ClinicalTrials.gov with the registration number NCT02719899 and approved by the National Heart and Lung Institute IRB. Subjects were screened in the ambulatory clinic and signed informed consent for the protocol prior to undertaking the study (Visit 1). Subjects initiated the study after an overnight fast with blood draw for the baseline immune response (Visit 2). After overnight fasting the study subjects consumed a fixed 500 calorie meal before 8am in the morning and fasted for 24 hours except for unrestricted water intake. Following a 24-hr. fasting blood draw (Fasting-Visit 3), the subjects ate another 500 calorie meal with post-prandial blood draws 3 hours later (Refed-Visit 3).
Lesion Subtype Segmentation. Five lesion subtypes were evaluated for hyperintensity including: (1) FLAIR lesions, (2) FLAIR lesions excluding pseudotumors, (3) FLAIR lesions including only pseudotumors, (4) T1 post-gadolinium lesions, and (5) diffusion weighted imaging (DWI) lesions. Hyperintense lesions were manually outlined by a vascular neurology fellow and board-certified neurologist (V.B.) and medical student (V.C.), then reviewed and edited by a board-certified vascular neurologist (A.F.) using Medical Image Processing, Analysis, and Visualization software (https://mipav.cit.nih.gov/). Pseudotumors, including both the central lesion and surrounding vasogenic edema, were outlined on FLAIR and defined as a FLAIR hyperintense lesion aligning with a central T1 ring-enhancing lesion located near the lateral ventricles. For “T1 post-gadolinium lesions” also referred to as “nodular contrast-enhancing lesions”, all lesions with contrast-enhancement, whether or not, they...
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Attribution 4.0 (CC BY 4.0)https://creativecommons.org/licenses/by/4.0/
License information was derived automatically
The National Heart, Lung, and Blood Institute (NHLBI), within the United States’ National Institutes of Health (NIH), established the Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC) in 2008 to develop the infrastructure needed to link the contents of the NHLBI Biorepository and the NHLBI Data Repository, and to promote the utilization of these scientific resources by the broader research community. Program utilization metrics were developed to measure the impact of BioLINCC on Biorepository access by researchers, including visibility, program efficiency, user characteristics, scientific impact, and research types. Input data elements were defined and are continually populated as requests move through the process of initiation through fulfillment and publication. This paper reviews the elements of the tracking metrics which were developed for BioLINCC and reports the results for the first six on-line years of the program.