HomeStrokeVol. 53, No. 8How Can Biobanks Help You in Your Research Projects? Free AccessResearch ArticlePDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissions ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toFree AccessResearch ArticlePDF/EPUBHow Can Biobanks Help You in Your Research Projects? Ana Catarina Fonseca, MD, PhD, Ângela Afonso, MSc, Maria Félix Martin, BSc and Cláudia C. Faria, MD, PhD Ana Catarina FonsecaAna Catarina Fonseca Correspondence to: Ana Catarina Fonseca, MD, PhD, Serviço de Neurologia, Hospital de Santa Maria, Avenida Professor Egas Moniz, 1649-035 Lisboa, Portugal. Email E-mail Address: [email protected] https://orcid.org/0000-0001-6913-5526 Serviço de Neurologia (A.C.F., M.F.M.), Hospital de Santa Maria, CHULN, Lisboa, Portugal. Instituto de Medicina Molecular (A.C.F.), Faculdade de Medicina, Universidade de Lisboa, Portugal. Search for more papers by this author , Ângela AfonsoÂngela Afonso Biobanco, Instituto de Medicina Molecular (A.A., C.C.F.), Faculdade de Medicina, Universidade de Lisboa, Portugal. Biobanco, Instituto de Medicina Molecular (A.A., C.C.F.), Faculdade de Medicina, Universidade de Lisboa, Portugal. Search for more papers by this author , Maria Félix MartinMaria Félix Martin Serviço de Neurologia (A.C.F., M.F.M.), Hospital de Santa Maria, CHULN, Lisboa, Portugal. Search for more papers by this author and Cláudia C. FariaCláudia C. Faria https://orcid.org/0000-0003-1259-9922 Department of Neurosurgery (C.C.F.), Hospital de Santa Maria, CHULN, Lisboa, Portugal. Search for more papers by this author Originally published31 Mar 2022https://doi.org/10.1161/STROKEAHA.121.036917Stroke. 2022;53:e392–e395Other version(s) of this articleYou are viewing the most recent version of this article. Previous versions: March 31, 2022: Ahead of Print Biobanks are specialized pathology laboratories that collect, analyze, store, and share biological samples and associated data.1 In this article, we aim to describe the main features of biobanks, how biobanks can be used for research purposes, main ethical-legal issues and aspects to consider about the quality of data and samples.What Types of Biobanks Exist and What Is Their Content?Biobanks may have different backgrounds and aims. Typically, they store biological materials that are annotated with data.Frequently, biobanks are created by hospitals, universities, research centers, or organizations. They can be either population-based (eg, UK biobank), disease-based (eg, Joinville stroke biobank), or project driven (eg, Chinese University of Hong Kong stroke biobank). Virtual biobank are electronic repositories of biological samples and other data, independently of where the specimens are stored.2A main factor that distinguishes a biobank from other type of research collection is that established governance mechanisms are in place to allow outsiders access to resources in a systematic way.3,4Biobanks can store different types of biological samples, such as human fluids (blood, serum, plasma, urine, saliva, and spinal fluid), cells (eg, bone marrow cells and peripheral blood mononuclear cells), or nucleic acids (RNA, DNA, mDNA, and microRNA) or tissues (eg, endarterectomy specimens). Tissues samples are important namely in the field of stroke oncology and cardiooncology. Methods that can be used to store tissue samples include frozen tissue processing and fixed formalin paraffin embedding. Paraffin embedding is superior to preserve morphological details while freezing is better to preserve antigen and enzyme expression.What Type of Data Is Usually Annotated to Samples?Personal and heath information is usually associated to samples. Examples of data that can be associated include demographics, history of illness, family history, cardiovascular risk factors, physical measures (eg, blood pressure and anthropometry) lifestyle, treatments, and clinical outcome. Variables associated with stroke characterization that are usually available include type of stroke and subtyping, time of blood collection, acute revascularization treatments, brain imaging, functional outcome, and follow-up. Clinical variables should ideally be defined according to established and accepted definitions and criteria. In the UK biobank disease associated variables are ascertained primarily via linkages to routinely collected coded national administrative health data sets and, therefore, provides International Classification of Disease codes for stroke and stroke related hospitalizations in addition to other diseases.What Type of Research Studies Can Be Done With Samples and Data From Biobanks?Data derived from biobanks can be used in different types of research studies ranging from basic research, translational research, population studies to clinical trials.Biobanks are considered a key asset for the development of precision medicine. Samples and data from biobanks are frequently used in omnics studies (genomics, transcriptomics, proteomics, metabolomics, and microbiome analysis). Well-established stroke biobanks with close collaboration between clinicians and geneticists are essential for supplying biological and clinical information required for large-scale studies like genome-wide association studies and next-generation sequencing studies.5Knowledge derived from biobanks can be used to discover diagnostic and prognostic biomarkers and novel therapeutic targets that may enhance prevention and optimize treatments.Biobanks may not only have samples that were collected at unique time points but also sequential sampling. This may be important to monitor and study natural disease history or response to treatment. Samples from the same patient collected at different time points in specified clinical contexts are important for biomarkers investigation and discovery. For example, the same individual may have blood samples that were collected during the acute stroke phase in the emergency department before revascularization treatment, after revascularization treatment, and during follow-up.Biobanks usually collect samples and data continuously on a long-term basis. They can be associated to a specific project or to future not yet defined research projects at the time of samples collections.3 Both retrospective and prospective studies can be done.Longitudinal sampling and collaborative studies across biobanks can contribute to increase the value of research studies. This requires standardization of data collection including stroke subtyping and sample collection and storage.Computational Platforms to Access and Analyze DataMany biobanks use a specific software for clinical data registration and sample management. The main advantages of this system include easy tracking of the samples and the possibility to build a custom-made clinical database, according to specific features of each disease collection. The process of sample registration produces a barcode to be affixed to the cryovials. The software also allows data management, data mining, and data analysis, which are key for translational research. Artificial intelligence methods can also be used to analyze data. Collaboration with bioinformatics and other professionals is key for a more comprehensive analysis of the data.Due to a high volume of data, the UK biobank is currently considering alternative ways to distribute data to researchers instead of just sending the bulk of data. Namely, it is starting to explore platform-based approaches that allow the researchers to use tools in the platform to perform data analysis.How to Get in Contact With a Biobank?Most biobanks are part of consortiums that provide information about the type of sample collections and number of samples that are available.The directory of the Biobanking and BioMolecular resources Research Infrastructure-European Research Infrastructure Consortium provides information about biobanks available across Europe (https://www.bbmri-eric.eu). The Biobank Resource Centre provides information of some biobanks that exist in Canada and in United States (https://www.Biobanking.org). In Australia, the NSW Biobank Certification Program specifies similar information (https://nsw.biobanking.org). Central provides an overview of biobanks that can be found worldwide including in Asia and Middle East (https://specimencentral.com/biobank-directory/). The H3Africa consortium gathers biospecimens from Africa (https://www.biorepository.africa).Another possible way to identify biobanks with available stroke collections is to search for research articles that used samples from biobank collections.How to Have Access to Samples and What Items to Include in the Project Proposal?Most biobanks are interested in having several users for their collections to ensure that there is no underuse of biospecimens. Following the biobanks mission to promote and facilitate biomedical research, biological samples stored in several biobank are accessible to all researchers, upon rigorous scientific, and ethical evaluation. Specific procedures to obtain samples and request forms may vary from center to center but usually involve obtaining ethical approval from institutional review boards and scientific review approval from the institutions that are associated with the biobank.For example, in the case of the Biobanco-iMM that was created to foster biomedical research, through national and international collaborative research projects, projects submitted to use samples and clinical information from the stroke collection need an external approval by the Ethics Committee of the Lisbon Academic Medical Centre and an approval by the biobank’s Scientific Committee, composed by scientists and clinicians with various backgrounds.6 The sample request form includes a brief description of the project, the identification of the Principal Investigator and the institution where the samples will be used, and the description of any ethical issues related to the transfer and usage of the samples, and its corresponding clinical data.Ethical Issues Related to Handling of Biological Samples and DataInternational, national, and regional ethical principles need to be followed by biobanks.Biobanks have to have established governance structures and procedures that protect the donors of the samples. Ethics approval may vary according to local legislations. For instances, the Portuguese legislation for the collection of human biological samples and associated clinical information in biobanks, requires prior approval by the local institutional Ethics Committee and by the National Commission for Data Protection. At the biobank, the collection and storage of biological samples is further authorized by the Ethics Committee of the Lisbon Academic Medical Centre and the associated clinical data collection is approved by the National Commission for Data Protection.The informed consent remains a fundamental legal and ethical document in clinical research. Most biobanks have an approved and specific written consent form for biological sample and clinical data collection. The donor or its legal representative needs to sign the informed consent before sample collection. Biobanks communicate to participants how the samples will be used to support biomedical research initiatives, and this implies that the material will be used in the future.3 The informed consent informs the donor about the potential future use of the biological material and corresponding clinical information for biomedical research. It also informs the donor where samples will be stored and maintained and how data will be protected.Anonymity and confidentiality of data and samples should be ensured during all procedures.Administrative Procedures to Obtain SamplesSamples are usually made available through material/data transfer agreements. An agreement is necessary to regulate the transfer of biomaterial between biobanks and research groups, to maintain certain quality standards and to register the routing of biological samples.7How Can Biobanks Assure Good Quality of Samples and Annotated Data?The institute of Medicine defines quality of data as data strong enough to support conclusions and interpretation equivalents to those derived from error-free data.8Accreditation and the observation of the standards of practice allow biobanks to operate professionally and to provide biological specimens of adequate quality.2 An important aspect of the creation, reliability, and sustainability of a biobank is the standardization of processes connected with sampling, storage and quality control.3 A minimum of quality check procedures should be done at planned intervals on biological samples and associated data. Since preanalytics and processing methods may impact the sample quality, some authors have proposed biorepositories to deposit their standard operating procedures in a centralized database.3The value of the samples in the biobank is not only defined by its physical qualities but also by the amount and the quality of the data associated with it.9 Incomplete or incorrect data can lead to samples with little value that may wrongly influence the outcome of a study.9In some biobanks, disease associated variables are ascertained primarily via linkages to routinely collected coded national administrative health data sets.10 These coded data may be incomplete. Up to 40% of participants with a stroke code in hospital, death record or primary care administrative data in the UK biobank did not have a code specifying their stroke subtype, although review of the full text medical records showed that stroke subtype was known in 99% of cases.10 This is an important limitation for stroke research studies. The International Stroke Genetics Consortium has already identified stroke subtyping as a top research priority.10 Automated methods applied namely to radiology reports have been evaluated to help to improve stroke subtyping.Also, self-reports of stroke may be used by some biobanks to determine clinical outcomes. This may influence case ascertainment if this information is not combined with other data sources.ConclusionsBiobanks provide access to a large number of biological samples with annotated data that can be used for research studies namely related to precision medicine. Ethical procedures have to be followed to protect the donors of the samples and assure privacy. Quality of data is essential to assure reproducibility of findings.Article InformationSources of FundingNone.Disclosures None.FootnotesThe opinions expressed in this article are not necessarily those of the editors or of the American Heart Association.For Sources of Funding and Disclosures, see page e394.Correspondence to: Ana Catarina Fonseca, MD, PhD, Serviço de Neurologia, Hospital de Santa Maria, Avenida Professor Egas Moniz, 1649-035 Lisboa, Portugal. Email [email protected]ulisboa.pt