Browsing by Subject "Biobank"

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    Biorepository and integrative genomics initiative: designing and implementing a preliminary platform for predictive, preventive and personalized medicine at a pediatric hospital in a historically disadvantaged community in the USA
    (Springer Nature, 2018-08) Jose, Rony; Rooney, Robert; Nagisetty, Naga; Davis, Robert; Hains, David; Pediatrics, School of Medicine
    Current healthcare is evolving to emphasize cost-effective care by leveraging results and outcomes of genomic and other advanced research efforts in clinical care and preventive health planning. Through a collaborative effort between the University of Tennessee Health Science Center (UTHSC) and Le Bonheur Children's Hospital (LBCH), the Biorepository and Integrative Genomics (BIG) Initiative was established to set up a pediatric-based DNA biorepository that can serve as a foundation for successful development of delivery platforms for predictive, preventive, and personalized medical services in Memphis, Tennessee, a historically disadvantaged community in the USA. In this paper, we describe the steps that were followed to establish the biorepository. We focused on domains that are essential for implementation of a biorepository for genomic research as an initial goal and identified patient consent, DNA extraction, storage and dissemination, and governance as essential components. Specific needs in each of these domains were addressed by respective solutions developed by multidisciplinary teams under the guidance of a governance model that involved experts from multiple hospital arenas and community members. The end result was the successful launch of a large-scale DNA biorepository, with patient consent greater than 75% in the first year. Our experience highlights the importance of performing pre-design research, needs assessment, and designing an ethically vetted plan that is cost-effective, easy to implement, and inclusive of the community that is served. We believe this biorepository model, with appropriate tailoring according to organizational needs and available resources, can be adopted and successfully applied by other small- to mid-sized healthcare organizations.
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    Ethical considerations for biobanks serving underrepresented populations
    (Wiley, 2025) Lee, Yoon Seo; Garrido, Nelson Luis Badia; Lord, George; Maggio, Zane Allan; Khomtchouk, Bohdan B.; Biomedical Engineering and Informatics, Luddy School of Informatics, Computing, and Engineering
    Biobanks are essential biological database resources for the scientific community, enabling research on the molecular, cellular, and genetic basis of human disease. They are crucial for computational, data-driven biomedical research, which advances precision medicine and the development of targeted therapies. However, biobanks often lack racial and ethnic diversity, with many data sets predominantly comprising individuals of white, primarily northern European, ancestry. Establishing or enhancing biobanks for the inclusion of historically underrepresented populations requires meticulous ethical and social planning beyond logistical, legal, and economic considerations. This guide provides a roadmap for building and sustaining diverse biobanks, emphasizing ethical guidelines and cultural sensitivity. We highlight the importance of obtaining informed consent from donors, respecting their bodily autonomy, and the economic and research benefits of diverse biobanks to enable precision medicine, drug discovery, and industry-academic partnerships. Prioritizing key ethical and social considerations allows biobanks to advance scientific knowledge while upholding the rights and autonomy of underrepresented populations. Diversity in biobank sample collection enhances research outcomes by ensuring findings are representative and applicable to various human population groups, fostering trust, promoting inclusivity, and addressing health disparities while informing health policy. This is vital to ensuring biobanking efforts contribute meaningfully to the advancement of health equity.
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    The Development and Initial Findings of A Study of a Prospective Adult Research Cohort with Inflammatory Bowel Disease (SPARC IBD)
    (Oxford University Press, 2022) Raffals, Laura E.; Saha, Sumona; Bewtra, Meenakshi; Norris, Cecile; Dobes, Angela; Heller, Caren; O’Charoen, Sirimon; Fehlmann, Tara; Sweeney, Sara; Weaver, Alandra; Bishu, Shrinivas; Cross, Raymond; Dassopoulos, Themistocles; Fischer, Monika; Yarur, Andres; Hudesman, David; Parakkal, Deepak; Duerr, Richard; Caldera, Freddy; Korzenik, Joshua; Pekow, Joel; Wells, Katerina; Bohm, Matthew; Perera, Lilani; Kaur, Manreet; Ciorba, Matthew; Snapper, Scott; Scoville, Elizabeth A.; Dalal, Sushila; Wong, Uni; Lewis, James D.; Medicine, School of Medicine
    Background: Clinical and molecular subcategories of inflammatory bowel disease (IBD) are needed to discover mechanisms of disease and predictors of response and disease relapse. We aimed to develop a study of a prospective adult research cohort with IBD (SPARC IBD) including longitudinal clinical and patient-reported data and biosamples. Methods: We established a cohort of adults with IBD from a geographically diverse sample of patients across the United States with standardized data and biosample collection methods and sample processing techniques. At enrollment and at time of lower endoscopy, patient-reported outcomes (PRO), clinical data, and endoscopy scoring indices are captured. Patient-reported outcomes are collected quarterly. The quality of clinical data entry after the first year of the study was assessed. Results: Through January 2020, 3029 patients were enrolled in SPARC, of whom 66.1% have Crohn's disease (CD), 32.2% have ulcerative colitis (UC), and 1.7% have IBD-unclassified. Among patients enrolled, 990 underwent colonoscopy. Remission rates were 63.9% in the CD group and 80.6% in the UC group. In the quality study of the cohort, there was 96% agreement on year of diagnosis and 97% agreement on IBD subtype. There was 91% overall agreement describing UC extent as left-sided vs extensive or pancolitis. The overall agreement for CD behavior was 83%. Conclusion: The SPARC IBD is an ongoing large prospective cohort with longitudinal standardized collection of clinical data, biosamples, and PROs representing a unique resource aimed to drive discovery of clinical and molecular markers that will meet the needs of precision medicine in IBD.