TY - JOUR AB - Introduction: The Minimum Information About BIobank Data Sharing (MIABIS) is a biobank-specific terminology enabling the sharing of biobank-related data for different purposes across a wide range of database implementations. After 4 years in use and with the first version of the individual-level MIABIS component Sample, Sample donor, and Event, it was necessary to revise the terminology, especially to include biobanks that work more in the data domain than with samples. Materials & Methods: Nine use-cases representing different types of biobanks, studies, and networks participated in the development work. They represent types of data, specific sample types, or levels of organization that were not included earlier in MIABIS. To support our revision of the Biobank entity, we conducted a survey of European biobanks to chart the services they provide. An important stakeholder group for biobanks include researchers as the main users of biobanks. To be able to render MIABIS more researcher-friendly, we collected different sample/data requests to analyze the terminology adjustment needs in detail. During the update process, the Core terminology was iteratively reviewed by a large group of experts until a consensus was reached. Results: With this update, MIABIS was adjusted to encompass data-driven biobanks and to include data collections, while also describing the services and capabilities biobanks offer to their users, besides the retrospective samples. The terminology was also extended to accommodate sample and data collections of nonhuman origin. Additionally, a set of organizational attributes was compiled to describe networks. Discussion: The usability of MIABIS Core v3 was increased by extending it to cover more topics of the biobanking domain. Additionally, the focus was on a more general terminology and harmonization of attributes with the individual-level entities Sample, Sample donor, and Event to keep the overall terminology minimal. With this work, the internal semantics of the MIABIS terminology was improved. AU - Eklund, N.* AU - Engels, C.* AU - Neumann, M.* AU - Strug, A.* AU - van Enckevort, E.* AU - Baber, R.* AU - Bloemers, M.* AU - Debucquoy, A.* AU - van der Lugt, A.* AU - Müller, H.* AU - Parkkonen, L.* AU - Quinlan, P.R.* AU - Urwin, E.* AU - Holub, P.* AU - Silander, K.* AU - Anton, G. C1 - 70236 C2 - 55456 CY - 140 Huguenot Street, 3rd Fl, New Rochelle, Ny 10801 Usa TI - Update of the minimum iinformation about BIobank data sharing (MIABIS) core terminology to the 3rd version. JO - Biopreserv. Biobank. PB - Mary Ann Liebert, Inc PY - 2024 SN - 1947-5535 ER - TY - JOUR AB - The characterization of DNA methylation patterns to identify epigenetic markers for complex human diseases is an important and rapidly evolving part in biomedical research. DNA samples collected and stored in clinical biobanks over the past years are an important source for future epigenetic studies. Isolated gDNA is considered stable when stored at low temperatures for several years. However, the effect of multiple use and the associated repeated thawing of long-term stored DNA samples on DNA methylation patterns has not yet been investigated. In this study, we examined the influence of up to 10 freeze and thaw cycles on global DNA methylation by comparing genome-wide methylation profiles. DNA samples from 19 healthy volunteers were either frozen at -80°C or subjected to up to 10 freeze and thaw cycles. Genome-wide DNA methylation was analyzed after 0, 1, 3, 5, or 10 thaw cycles using the Illumina Infinium MethylationEPIC BeadChip. Evaluation of the global DNA methylation profile by beta-value density plots and multidimensional scaling plots revealed an expected clear participant-dependent variability, but a very low variability depending on the freeze and thaw cycles. In accordance, no significant difference in any of the methylated cytosine/guanine sites studied could be detected in the performed statistical analyses. Our results suggest that long-term frozen DNA samples are still suitable for epigenetic studies after multiple thaw cycles. AU - Kopfnagel, V.* AU - Klopp, N.* AU - Bernemann, I.* AU - Nizhegorodtseva, N.* AU - Wilson, R. AU - Gronauer, R.* AU - Seifert, M.* AU - Illig, T.* C1 - 67686 C2 - 53993 CY - 140 Huguenot Street, 3rd Fl, New Rochelle, Ny 10801 Usa SP - 110-114 TI - Effects of repeated freeze and thaw cycles on the genome-wide DNA methylation profile of isolated genomic DNA. JO - Biopreserv. Biobank. VL - 22 IS - 2 PB - Mary Ann Liebert, Inc PY - 2024 SN - 1947-5535 ER - TY - JOUR AB - Introduction: The Minimum Information About BIobank data Sharing (MIABIS) was initiated in 2012. MIABIS aims to create a common biobank terminology to facilitate data sharing in biobanks and sample collections. The MIABIS Core terminology consists of three components describing biobanks, sample collections, and studies, in which information on samples and sample donors is provided at aggregated form. However, there is also a need to describe samples and sample donors at an individual level to allow more elaborate queries on available biobank samples and data. Therefore the MIABIS terminology has now been extended with components describing samples and sample donors at an individual level. Materials and Methods: The components were defined according to specific scope and use cases by a large group of experts, and through several cycles of reviews, according to the new MIABIS governance model of BBMRI-ERIC (Biobanking and Biomolecular Resources Research Infrastructure-European Research Infrastructure Consortium). The guiding principles applied in developing these components included the following terms: model should consider only samples of human origin, model should be applicable to all types of samples and all sample donors, and model should describe the current status of samples stored in a given biobank. Results: A minimal set of standard attributes for defining samples and sample donors is presented here. We added an "event" component to describe attributes that are not directly describing samples or sample donors but are tightly related to them. To better utilize the generic data model, we suggest a procedure by which interoperability can be promoted, using specific MIABIS profiles. Discussion: The MIABIS sample and donor component extensions and the new generic data model complement the existing MIABIS Core 2.0 components, and substantially increase the potential usability of this terminology for better describing biobank samples and sample donors. They also support the use of individual level data about samples and sample donors to obtain accurate and detailed biobank availability queries. AU - Eklund, N.* AU - Andrianarisoa, N.H.* AU - van Enckevort, E.* AU - Anton, G. AU - Debucquoy, A.* AU - Mueller, H.* AU - Zaharenko, L.* AU - Engels, C.* AU - Ebert, L.* AU - Neumann, M.* AU - Geeraert, J.* AU - T'Joen, V.* AU - Demski, H. AU - Caboux, E.* AU - Proynova, R.* AU - Parodi, B.* AU - Mate, S.* AU - van Iperen, E.* AU - Merino-Martinez, R.* AU - Quinlan, P.R.* AU - Holub, P.* AU - Silander, K.* C1 - 58987 C2 - 48469 CY - 140 Huguenot Street, 3rd Fl, New Rochelle, Ny 10801 Usa SP - 155-164 TI - Extending the minimum information about bIobank data sharing terminology to describe samples, sample donors, and events. JO - Biopreserv. Biobank. VL - 18 IS - 3 PB - Mary Ann Liebert, Inc PY - 2020 SN - 1947-5535 ER - TY - JOUR AB - The known challenge of underutilization of data and biological material from biorepositories as potential resources for medical research has been the focus of discussion for over a decade. Recently developed guidelines for improved data availability and reusability - entitled FAIR Principles (Findability, Accessibility, Interoperability, and Reusability) - are likely to address only parts of the problem. In this article, we argue that biological material and data should be viewed as a unified resource. This approach would facilitate access to complete provenance information, which is a prerequisite for reproducibility and meaningful integration of the data. A unified view also allows for optimization of long-term storage strategies, as demonstrated in the case of biobanks. We propose an extension of the FAIR Principles to include the following additional components: (1) quality aspects related to research reproducibility and meaningful reuse of the data, (2) incentives to stimulate effective enrichment of data sets and biological material collections and its reuse on all levels, and (3) privacy-respecting approaches for working with the human material and data. These FAIR-Health principles should then be applied to both the biological material and data. We also propose the development of common guidelines for cloud architectures, due to the unprecedented growth of volume and breadth of medical data generation, as well as the associated need to process the data efficiently. AU - Holub, P.* AU - Kohlmayer, F.* AU - Prasser, F.* AU - Mayrhofer, M.T.* AU - Schlünder, I.* AU - Martin, G.M.* AU - Casati, S.* AU - Koumakis, L.* AU - Wutte, A.* AU - Kozera, L.* AU - Strapagiel, D.* AU - Anton, G. AU - Zanetti, G.* AU - Sezerman, O.U.* AU - Mendy, M.* AU - Valík, D.* AU - Lavitrano, M.* AU - Dagher, G.* AU - Zatloukal, K.* AU - van Ommen, G.B.* AU - Litton, J.E.* C1 - 52776 C2 - 44347 CY - New Rochelle SP - 97-105 TI - Enhancing reuse of data and biological material in medical research: From FAIR to FAIR-health. JO - Biopreserv. Biobank. VL - 16 IS - 2 PB - Mary Ann Liebert, Inc PY - 2018 SN - 1947-5535 ER - TY - JOUR AU - Doucet, M.* AU - Becker, K.F.* AU - Björkman, J.* AU - Bonnet, J.* AU - Clément, B.* AU - Daidone, M.G.* AU - Duyckaerts, C.* AU - Erb, G.* AU - Haslacher, H.* AU - Hofman, P.* AU - Huppertz, B.* AU - Junot, C.* AU - Lundeberg, J.* AU - Metspalu, A.* AU - Lavitrano, M.* AU - Litton, J.E.* AU - Moore, H.M.* AU - Morente, M.* AU - Naimi, B.Y.* AU - Oelmueller, U.* AU - Ollier, B.* AU - Parodi, B.* AU - Ruan, L.* AU - Stanta, G.* AU - Turano, P.* AU - Vaught, J.* AU - Watson, P.* AU - Wichmann, H.-E. AU - Yuille, M.* AU - Zaomi, M.* AU - Zatloukal, K.* AU - Dagher, G.* C1 - 51362 C2 - 42989 CY - New Rochelle SP - 270-276 TI - Quality Matters: 2016 Annual Conference of the National Infrastructures for Biobanking. JO - Biopreserv. Biobank. VL - 15 IS - 3 PB - Mary Ann Liebert, Inc PY - 2017 SN - 1947-5535 ER - TY - JOUR AU - Thasler, R.M.K.* AU - Berghammer, A.J.* AU - Kirchner, T.* AU - Slotta-Huspenina, J.* AU - Becker, K.F.* AU - Schiergens, T.* AU - Thasler, W.E.* AU - Wichmann, H.-E. C1 - 50522 C2 - 42402 CY - New Rochelle SP - 75-79 TI - Federated biobanking with corporate service unit: The Munich biobank Alliance Blueprint. JO - Biopreserv. Biobank. VL - 15 IS - 1 PB - Mary Ann Liebert, Inc PY - 2017 SN - 1947-5535 ER - TY - JOUR AB - BACKGROUND: In the present study, we examined the effect of sample storage on the reproducibility of several inflammatory biomarkers, including high-sensitivity C-reactive protein (hsCRP), high-sensitivity interleukin-6 (hsIL6), and high-sensitivity tumor necrosis factor alpha (hsTNFα). In addition, we assessed inter- and intra-assay variability between collaborating biobanks. METHODS: In total, 240 fasting plasma samples were obtained from the LifeLines biobank. Samples had been stored for less than 2 or more than 4 years at -80°C. Measurements were performed at three different laboratories. hsCRP was measured by immunonephelometry and ELISA, hsIL6, and hsTNFα samples were measured with ELISAs from two different manufacturers. For confirmation, similar analyses were performed on samples obtained from a subpopulation of 80 obese individuals. Passing-Bablok regression analysis and Bland-Altman plots were used to compare the results. RESULTS: We observed good stability of samples stored at -80°C. hsCRP measured on the day of blood draw was similar to levels measured after more than 4 years of storage. There were small interlaboratory differences with the R&D ELISAs for hsIL6 and hsTNFα. We found a linear correlation between the Bender Medsystems ELISA and the R&D ELISA for hsIL6, with significantly higher levels measured with the R&D ELISA. Over 90% of hsTNFα samples measured with the IBL ELISA were below the detection limit of 0.13 ng/L, rendering this assay unsuitable for large-scale analysis. Similar results were found in the confirmation study. CONCLUSION: In summary, plasma hsCRP showed good stability in samples stored for either less than 2 years or more than 4 years at -80°C. Both the R&D and Bender Medsystems for hsIL6 measurement yielded similar results. The IBL hsTNFα assay is not suited for use in biobanking samples. Assays for the measurement of inflammatory biomarker assays should be rigorously tested before large sample sets are measured. AU - van Waateringe, R.P.* AU - Muller Kobold, A.C.* AU - van Vliet-Ostaptchouk, J.V.* AU - van der Klauw, M.M.* AU - Koerts, J.* AU - Anton, G. AU - Peters, A. AU - Trischler, G.* AU - Kvaløy, K.* AU - Naess, M.* AU - Videm, V.* AU - Hveem, K.* AU - Waldenberger, M. AU - Koenig, W.* AU - Wolffenbuttel, B.H.R.* C1 - 52330 C2 - 43919 CY - New Rochelle SP - 512-518 TI - Influence of storage and inter- and Intra-assay variability on the measurement of inflammatory biomarkers in population-based biobanking. JO - Biopreserv. Biobank. VL - 15 IS - 6 PB - Mary Ann Liebert, Inc PY - 2017 SN - 1947-5535 ER - TY - JOUR AB - Biobanks are the biological back end of data-driven medicine, but lack standards and generic solutions for interoperability and information harmonization. The move toward a global information infrastructure for biobanking demands semantic interoperability through harmonized services and common ontologies. To tackle this issue, the Minimum Information About BIobank data Sharing (MIABIS) was developed in 2012 by the Biobanking and BioMolecular Resources Research Infrastructure of Sweden (BBMRI.se). The wide acceptance of the first version of MIABIS encouraged evolving it to a more structured and descriptive standard. In 2013 a working group was formed under the largest infrastructure for health in Europe, Biobanking and BioMolecular Resources Research Infrastructure (BBMRI-ERIC), with the remit to continue the development of MIABIS (version 2.0) through a multicountry governance process. MIABIS 2.0 Core has been developed with 22 attributes describing Biobanks, Sample Collections, and Studies according to a modular structure that makes it easier to adhere to and to extend the standard. This integration standard will make a great contribution to the discovery and exploitation of biobank resources and lead to a wider and more efficient use of valuable bioresources, thereby speeding up the research on human diseases. Many within the European Union have accepted MIABIS 2.0 Core as the "de facto" biobank information standard. AU - Merino-Martinez, R.* AU - Norlin, L.* AU - van Enckevort, D.* AU - Anton, G. AU - Schuffenhauer, S. AU - Silander, K.* AU - Mook, L.* AU - Holub, P.* AU - Bild, R.* AU - Swertz, M.A.* AU - Litton, J.E.* C1 - 48109 C2 - 39907 CY - New Rochelle SP - 298-306 TI - Toward global biobank integration by implementation of the Minimum Information About BIobank Data Sharing (MIABIS 2.0 Core). JO - Biopreserv. Biobank. VL - 14 IS - 4 PB - Mary Ann Liebert, Inc PY - 2016 SN - 1947-5535 ER - TY - JOUR AB - Genetically modified animals are unique models with enormous scientific potential. Cryopreservation of pre-implantation embryos or of spermatozoa is a common approach to save those lines. The breeding of a line can be discontinued if a sufficient number of samples have been cryopreserved. To maintain the opportunity to recover a line, it is mandatory to assess the quality of the cryopreserved samples and to assure safe long-term storage conditions. Here, we investigated the revitalization rate of cryopreserved pre-implantation embryos stored in-house up to 158 months, of imported (and shipped) embryos, and of embryos received after in vitro fertilization. The storage period did not affect the revitalization rate, whereas the recovery of imported embryos was significantly reduced, possibly due to shipment conditions. The genotypes of genetically modified pups received following embryo-transfer were slightly smaller than expected by Mendelian laws. Intensive investigations of the hygienic state of the cryopreserved samples and the equipment used never showed microbiological contamination of a sample within a cryo-tube. However, environmental organisms were found frequently in the permanent freezers and dry shippers used. Since such contamination cannot be completely excluded and an embryo-transfer might not lead in all cases to a secure rederivation, foster mothers and revitalized pups should be housed in an intermediate facility and their health assessed before introducing them into the target facility. AU - Ramin, M.* AU - Bürger, A. AU - Hörlein, A. AU - Kerkau, D.* AU - von Walcke-Wulffen, V.* AU - Nicklas, W.* AU - Schenkel, J.* C1 - 42771 C2 - 35302 CY - New Rochelle SP - 343-350 TI - Stability of cryopreserved samples of mutant mice. JO - Biopreserv. Biobank. VL - 12 IS - 5 PB - Mary Ann Liebert, Inc PY - 2014 SN - 1947-5535 ER - TY - JOUR AB - Cohort studies and biobank projects have led to public discussions in several European countries in the past. In Germany, many medium-sized studies are currently running successfully in terms of respondent rates. However, EU-wide research on general public perceptions of biobanks and cohort studies have shown that Germany is among those countries where people express the highest reluctance for providing body material and other data for research purposes. Because of early efforts of the just-initiated German National Cohort Study, we are able to begin to investigate in greater detail how various groups of people across Germany reflect and discuss the ongoing implementation of cohort studies and biobanking in Germany. Our research is based on 15 focus group discussions in four German regions, as well as on Eurobarometer poll data on biobanking. AU - Starkbaum, J.* AU - Gottweis, H.* AU - Gottweis, U.* AU - Kleiser, C. AU - Linseisen, J. AU - Meisinger, C. AU - Kamtsiuris, P.* AU - Moebus, S.* AU - Jöckel, K.-H.* AU - Boerm, S.* AU - Wichmann, H.-E. C1 - 31381 C2 - 34449 CY - New Rochelle SP - 121-130 TI - Public perceptions of cohort studies and biobanks in Germany. JO - Biopreserv. Biobank. VL - 12 IS - 2 PB - Mary Ann Liebert, Inc PY - 2014 SN - 1947-5535 ER - TY - JOUR AU - Wichmann, H.-E. C1 - 2597 C2 - 28381 SP - 1 TI - Need for guidelines for standardized biobanking. JO - Biopreserv. Biobank. VL - 8 IS - 1 PB - Mary Ann Liebert Inc PY - 2010 SN - 1947-5535 ER - TY - JOUR AU - Yuille, M.* AU - Illig, T. AU - Hveem, K.* AU - Schmitz, G.* AU - Hansen, J.* AU - Neumaier, M.* AU - Tybring, G.* AU - Wichmann, H.-E. AU - Ollier, B.* C1 - 6152 C2 - 28239 SP - 65-69 TI - Laboratory management of samples in biobanks: European consensus expert group report. JO - Biopreserv. Biobank. VL - 8 IS - 1 PB - Liebert Inc. PY - 2010 SN - 1947-5535 ER - TY - JOUR AB - Biobanking is of high importance for research in rare diseases. There are >6,000 rare diseases with at least 30 million people affected in the European Union (EU). The European Commission (EC) has prioritized rare diseases in recent health and research programs. The rarity and diversity of rare diseases and their associated biomaterials harbor specific challenges and opportunities for biobanking requiring transnational collaboration and harmonization. Small collections or even individual samples may be extremely precious for research. Importantly, most rare disease biobanks work through the active participation of patients and patient organizations, and share benefits with them. This article gives recommendations related to rare disease biobanking reflecting consensus of an expert working group of the Biobank and Biomolecular Research Infrastructure program at a meeting in Munich on December 17-18, 2008. AU - Lochmüller, H.* AU - Aymé, S.* AU - Pampinella, F.* AU - Melegh, B.* AU - Kuhn, K.A.* AU - Antonarakis, S.E.* AU - Meitinger, T. C1 - 31576 C2 - 34561 SP - 155-156 TI - The role of biobanking in rare diseases: European consensus expert group report. JO - Biopreserv. Biobank. VL - 7 IS - 3 PY - 2009 SN - 1947-5535 ER -