Establishment of a Biorepository for Down Syndrome: Experience of the Inter-Institutional Multidisciplinary BioBank - BioBIM.

BACKGROUND: Down syndrome, or Trisomy 21, is the leading genetic cause of cognitive disability in children and is associated with a high risk of several comorbidities, particularly congenital heart defects, early onset Alzheimer's disease, leukaemia, and autoimmune disorders. OBJECTIVE: This study describes the design, methods, and operational procedures employed to establish a biobank dedicated to Down syndrome that can support research projects investigating the effects of various genetic and environmental factors on this complex disease. METHODS: Blood was collected from all recruited subjects, processed, aliquoted and immediately frozen at -80 °C in the Interinstitutional Multidisciplinary BioBank (BioBIM) facilities. A small aliquot of the sample was used to perform blood tests for which analysis would not be feasible at a later date, such as blood cell counts. Each biological sample was coded, assigned a Standard PREanalytical Code, and registered in the oloBIOBANK software connected to a medical card containing all the donor's anamnestic data. All samples were stored under continuous real-time temperature recording using a freezer connected to a T-GUARD alarm system. In addition, a radiofrequency identification tracking system strictly monitored each cryopreservation operation performed throughout the sample lifecycle. RESULTS: Biological samples were collected from 454 individuals with Down syndrome from 2007 to 2023. A total of 2233 biological samples were available for research purposes, including whole blood in different anticoagulants, serum, plasma, and frozen peripheral blood mononuclear cells. The quality of the nucleic acids obtained through specific standard operating procedures demonstrated that these samples were appropriate for clinical and basic research. CONCLUSION: By establishing this biobank, we have gathered a significant number of biological samples and clinical data from individuals with Down syndrome, thereby fostering collaboration between different research groups in an open and transparent manner. Sharing expertise and resources among scientists will ultimately facilitate the transfer of knowledge to clinical practice, leading to the development of more effective therapeutic treatments to improve the outcomes and quality of life of patients with Down syndrome.

Exploring biorepository donation patterns, experiences, and recommendations: a mixed-methods study among Appalachian adults enrolled in a sugary drink reduction program.

Background: Under-represented subgroups in biomarker research linked to behavioral health trials may impact the promise of precision health. This mixed methods study examines biorepository donations across an Appalachian sample enrolled in a sugary drink reduction intervention trial. Methods: Participants enrolled in the behavioral trial were asked to join an optional biomarker study and were tracked for enrollment and biospecimen returns (stool and/or buccal sample). At 6 months, participants completed a summative interview on decision-making process, experiences collecting samples, and recommendations to encourage biospecimen donation. Return rates were analyzed across demographics (i.e., age, gender, race, education, income, health literacy status, and rurality status) using chi-squares. Qualitative data were content coded with differences compared by biomarker study enrollment and donation choices. Results: Of the 249 invited participants, 171 (61%) enrolled, and 63% (n = 157) returned buccal samples and 49% (n = 122) returned stool samples. Metro residing participants were significantly more likely (56%) to return stool samples compared to non-metro (39%) counterparts [x2(1) = 6.61; p = 0.01]. Buccal sample return had a similar trend, 67 and 57%, respectively for metro vs. non-metro [x2(1) = 2.84; p = 0.09]. An additional trend indicated that older (≥40 years) participants were more likely (55%) to donate stool samples than younger (43%) participants [x2(1) = 3.39; p = 0.07]. No other demographics were significantly associated with biospecimen return. Qualitative data indicated that societal (66-81%) and personal (41-51%) benefits were the most reported reasons for deciding to donate one or both samples, whereas mistrust (3-11%) and negative perceptions of the collection process (44-71%) were cited the most by those who declined one or both samples. Clear instructions (60%) and simple collection kits (73%) were donation facilitators while challenges included difficult stool collection kits (16%) and inconveniently located FedEx centers (16%). Recommendations to encourage future biorepository donation were to clarify benefits to science and others (58%), provide commensurate incentives (25%), explain purpose (19%) and privacy protections (20%), and assure ease in sample collection (19%). Conclusion: Study findings suggest the need for biomarker research awareness campaigns. Researchers planning for future biomarker studies in medically underserved regions, like Appalachia, may be able to apply findings to optimize enrollment.

Do biobanks need pharmacists? Support of pharmacy students to biobanking of human biological material for pharmaceutical research and development.

Objectives: This study aimed to assess the biobank awareness among Polish pharmacy students and how it affects their support for biobank research. Methods: A survey among 366 pharmacy students enrolled at two Polish medical universities: the Poznan University of Medical Sciences and Medical University of Lublin was conducted. Results: Although most pharmacy students felt positivity about biobanking and expressed the willingness to donate their biospecimens for biomedical research, their awareness on research biobanks was low. Their willingness to participate was driven by the desire to benefit society, help advance science and develop new therapies. While students supported donation for most types of research, biobanks run by medical universities were the highest trusted research institutions. The primary factors associated with student's willingness to participate were religiosity and place of study. Notably, nonreligious students and those studying in Poznan exhibited more favourable attitudes toward donating for research and expressed greater support for the establishment of research biobanks in Poland. Conclusion: Since biobank awareness among future pharmacists is inadequate incorporating biobank competency domains into education and training of pharmacists is required.

A systematic review of biobanks in Latin America: Strengths and limitations for biomedical research.

Biobanks are valuable tools for developing and applying scientific research and international cooperation through the collection of biological materials and their associated data. Systematic research following the Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines was conducted in late 2022 in PubMed and Scopus, and generated 17 articles to be reviewed in depth and critically assessed using the Critical Appraisal Skills Programme Checklist due to the limited available data; 12 relevant health organizations and government websites outside of peer-reviewed journals were also included. Our research identified 44 biobanks in Latin America. In general, there is a lack of regulation and legislation guaranteeing the stored materials' quality and institutional collaboration. We believe a consensus needs to be reached regarding the terminology and definitions used for biobanks. The design for informed consent should also be agreed upon to ensure the privacy of the data shared among institutions. In conclusion, in Latin America, there is a clear need for government support in creating specific procedures for biobanks and providing further support for existing biobanks.

The ethics of clinical research in the era of COVID-19.

There is an urgent need for increased understanding of COVID-19 and strategies for its prevention, treatment, and mitigation. All participants in the research enterprise, including institutional review boards, have an ethical duty to protect participants and ensure that the benefits gained from such research do not conflict with the core principles that guided researchers prior to the pandemic. In this review, we discuss the ethical issues surrounding initiation and conduct of clinical trials, focusing on novel COVID-19 therapeutic, vaccine, or biospecimen research, using the principles of autonomy, beneficence, and justice. We discuss strategies to manage the practical challenges associated with the conduct of clinical trials, with an emphasis on maintaining the rights and welfare of research participants.

Applying Findable, Accessible, Interoperable, and Reusable Principles to Biospecimens and Biobanks.

The importance of stimulating greater sharing of data for use and reuse in health research is widely recognized. To this end, the findable, accessible, interoperable, and reusable (FAIR) principles for data have been developed and widely accepted in the research community. Research biospecimens are a resource that leads to much of this health research data but are also a form of data. Therefore, the FAIR principles should apply to biospecimens. Nevertheless, there is a widespread problem of not sharing biospecimen resources that is clearly visible within the research arena. The impacts of this are likely to include diversion of precious research funds into compiling duplicate biospecimen cohorts, detraction from research productivity as researchers compete for and create duplicate resources, and deterrence of attempts to assess research reproducibility. This article explores some of the barriers that may limit availability of FAIR biospecimens. These barriers relate to the type of biospecimen collections and the characteristics of the custodians that influence their intention and interest in sharing. Barriers also relate to the ethical, legal, and social issues concerning collections, the research context of the collections, and cost and expertise involved in repurposing collections to enable sharing. Several solutions to increase sharing are identified. Some have recently been implemented, including enhancing biospecimen locators with tools to guide researchers and facilitating transfer of research collections to centralized biobank infrastructures at the conclusion of projects. New proposed solutions include improving search capabilities within publication databases, and introduction of evidence-based justifications for all new collections into peer-reviewed grant competition processes. It is recognized that there are both scientific factors and practical reasons that can impose limits to sharing biospecimens. However, funding availability, productivity, and progress in health research all stand to benefit from improved sharing of research biospecimen collections.

"My Blood, You Know, My Biology Being out There ": Consent and Participant Control of Biological Samples.

The widespread and persistent underrepresentation of groups experiencing health disparities in research involving biospecimens is a barrier to scientific knowledge and advances in health equity. To ensure that all groups have the opportunity to participate in research and feel welcome and safe doing so, we must understand how research studies may be shaped to promote inclusion. In this study, we explored the decision to participate in hypothetical research scenarios among African American adults (n = 169) that varied on the basis of four attributes (form of consent, reason for research, institutional affiliation and race of the researcher). Findings indicate that participants were largely willing to contribute to biobanks but significantly preferred opportunities where they had control over the use of their biological samples through tiered or study-specific forms of consent. Broad consent procedures, although common and perhaps preferred by participants with high trust in researchers, may amount to an exclusionary practice.

Cultural diversity of traditions for the disposal of exfoliated teeth: Implications for researchers.

OBJECTIVES: For decades, researchers in anthropology and archaeology have used teeth, including exfoliated primary teeth, as fossil records of people's physical life experiences. Recently, researchers in psychiatry, epidemiology, environmental health and other fields have recognized the potential for teeth to serve as biomarkers of other early-life experiences, including trauma exposure and other types of psychosocial stress, which are potent determinants of later mental and physical health problems. Despite the emerging appreciation and value of teeth as biospecimens, little is understood about cultural beliefs and practices surrounding exfoliated teeth. If known, such insights could inform culturally appropriate practices for paediatric dental care and improve protocols for the ethical acquisition of teeth as biospecimens in research studies. To address this gap, a qualitative systematic review was performed to summarize the variety of traditions performed worldwide for disposing of primary exfoliated teeth. METHODS: PubMed, Google Scholar, AnthroSource, Anthropological Literature, EHRAF World Cultures and Anthropology Plus were searched with a systematic search strategy to identify articles published from inception through December 2, 2021. Citations of relevant papers were also forward and backward searched. RESULTS: There were 3289 articles that met the initial inclusion criteria, of which 37 were included after individual screening and applying exclusion criteria. Thematic analysis was used to identify 74 distinct traditions related to the disposal of exfoliated teeth, which were organized into seven general themes: (1) giving teeth to a tooth fairy, (2) giving teeth to mouse figures, (3) throwing teeth, (4) hiding/keeping teeth, (5) burying teeth, (6) giving teeth to animals and (7) eating the tooth. CONCLUSIONS: The results of this study elucidate the diversity within-yet universality of-exfoliated tooth disposal traditions and underscore the importance of tooth exfoliation as a major milestone during child development. Special attention must be paid to these traditions and related ethical concerns when designing research protocols related to their collection. With a greater understanding of beliefs and practices related to exfoliated teeth, researchers will be better equipped to engage children and families in studies that include analyses of exfoliated teeth, collect teeth as biospecimens, and broaden the use of teeth in research.

Additive partially linear model for pooled biomonitoring data.

Human biomonitoring involves monitoring human health by measuring the accumulation of harmful chemicals, typically in specimens like blood samples. The high cost of chemical analysis has led researchers to adopt a cost-effective approach. This approach physically combines specimens and subsequently analyzes the concentration of toxic substances within the merged pools. Consequently, there arises a need for innovative regression techniques to effectively interpret these aggregated measurements. To address this need, a new regression framework is proposed by extending the additive partially linear model (APLM) to accommodate the pooling context. The APLM is well-known for its versatility in capturing the complex association between outcomes and covariates, which is particularly valuable in assessing the complex interplay between chemical bioaccumulation and potential risk factors. Consistent estimators of the APLM are obtained through an iterative process that disaggregates information from the pooled observations. The performance is evaluated through simulations and an environmental health study focused on brominated flame retardants using data from the National Health and Nutrition Examination Survey.

The Landscape of US and Global Rare Tumor Research Programs: A Systematic Review.

Rare cancers and other rare nonmalignant tumors comprise 25% of all cancer diagnoses and account for 25% of all cancer deaths. They are difficult to study due to many factors, including infrequent occurrence, lack of a universal infrastructure for data and/or tissue collection, and a paucity of disease models to test potential treatments. For each individual rare cancer, the limited number of diagnosed cases makes it difficult to recruit sufficient patients for clinical studies, and rare cancer research studies are often siloed. As a result, progress has been slow for many of these cancers. While rare cancer research efforts have increased over time, the breadth of the research landscape is not known. A recent literature search revealed a sharp increase in rare tumor, and rare cancer publications began in the early 2000s. To identify rare cancer research efforts being conducted in the US and globally, we conducted an online search of rare tumor/rare cancer research programs and identified 76 programs. To gain a deeper understanding of these programs, we composed and conducted a survey to ask programs for details about their research efforts. Of the 42 programs contacted to complete the survey, 23 programs responded. Survey results show most programs are collecting clinical data, molecular data, and biospecimens, and many are conducting molecular analyses. This landscape analysis demonstrates that multiple rare cancer research efforts are ongoing, and the rare cancer community may benefit from collaboration among stakeholders to accelerate research and improve patient outcomes.

Developing cancer biobanks in Romania: understanding the knowledge and recommendations in assessing a clinical dataset for biospecimens.

Background and aims: In the context of the novelty of personalized medicine and biobanking in Romania, there is an acute need to analyze the degree of knowledge of the key actors in the domain. The present study sought to investigate the understanding of 'biobanking' and 'personalized medicine' in three categories of participants in the development of a biobank - health professionals (clinicians/diagnosticians), scientific researchers, and patients, in order to identify possible faults regarding the level of information. The secondary objective of this study was to identify key elements and relevant data that should be detailed in the clinical dataset that accompanies a biological sample. Methods: A total of 120 participants were included in this study that were divided into three categories that represent key actors in the development and management of a cancer biobank - clinicians (n=40), scientific researchers (n=40), and oncology patients (n=40). Results: The survey indicated that the terms 'biobank' and 'personalized medicine' are unknown only in a proportion of patients, while for the other two groups, these terms are already known. The second questionnaire allowed the arrangement of a recommended clinical dataset to be filled when a biological sample is provided to be included in a cancer biobank. Conclusions: The trust of patients and healthcare professionals in building biobanks that adhere to ethical and operational standards in Romania is important, as the development of artificial intelligence and databases allows advanced knowledge and connection of findings from different databases and, therefore, brings the concept of personalized medicine closer to the clinical practice. The information included in this dataset will be integrated and constitutes a comprehensive biobank database. All these aspects are meant to increase the utility of the specimens in cancer research, as clearly annotated samples, along with prospective data, bring valuable knowledge that helps scientific researchers and clinicians make the clinical connection between the molecular alterations and the phenotype of particular patients or a disease.

The APPRISE Virtual Biobank for Infectious Diseases.

The Australian Partnership for Preparedness Research on InfectiouS disease Emergencies (APPRISE) has developed a virtual biobank to support infectious disease research in Australia. The virtual biobank (https://apprise.biogrid.org.au) integrates access to existing distributed infectious disease biospecimen collections comprising multiple specimen types, including plasma, serum, and peripheral blood mononuclear cells. Through the development of a common data model, multiple collections can be searched simultaneously via a secure web portal. The portal enhances the visibility and searchability of existing collections within their current governance and custodianship arrangements. The portal is easily scalable for integration of additional collections.

Selling Clinical Biospecimens: Guidance for Researchers and Private Industry.

The recently revised Common Rule requires that donors of biospecimens for research be informed if their specimens might be used for commercial profit. The Common Rule, however, does not apply to sharing or selling de-identified biospecimens that are "leftover" from clinical uses. As a result, many medical researchers remain uncertain of their legal and ethical obligations when a commercial entity expresses interest in these specimens.

Applied Molecular-Based Quality Control of Biobanked Samples for Multi-Omics Approach.

Biobanks are vital for high-throughput translational research, but the rapid development of novel molecular techniques, especially in omics assays, poses challenges to traditional practices and recommendations. In our study, we used biospecimens from oncological patients in Polish clinics and collaborated with the Indivumed Group. For serum/plasma samples, we monitored hemolysis, controlled RNA extraction, assessed cDNA library quality and quantity, and verified NGS raw data. Tissue samples underwent pathologic evaluation to confirm histology and determine tumor content. Molecular quality control measures included evaluating the RNA integrity number, assessing cDNA library quality and quantity, and analyzing NGS raw data. Our study yielded the creation of distinct workflows for conducting preanalytical quality control of serum/plasma and fresh-frozen tissue samples. These workflows offer customization options to suit the capabilities of different biobanking entities. In order to ensure the appropriateness of biospecimens for advanced research applications, we introduced molecular-based quality control methods that align with the demands of high-throughput assays. The novelty of proposed workflows, rooted in innovative molecular techniques, lies in the integration of these QC methods into a comprehensive schema specifically designed for high-throughput research applications.

Attitudes Toward Providing Open Access for Use of Biospecimens and Health Records: A Cross-Sectional Study from Jordan.

Purpose: Biospecimen repositories and big data generated from clinical research are critically important in advancing patient-centered healthcare. However, ethical considerations arising from reusing clinical samples and health records for subsequent research pose a hurdle for big-data health research. This study aims to assess the public's opinions in Jordan toward providing blanket consent for using biospecimens and health records in research. Participants and Methods: A cross-sectional study utilizing a self-reported questionnaire was carried out in different cities in Jordan, targeting adult participants. Outcome variables included awareness of clinical research, participation in clinical research, and opinions toward providing open access to clinical samples and records for research purposes. Descriptive analysis was utilized for reporting the outcome as frequency (percentages) out of the total responses. Univariate and multivariate logistic regression were used to investigate the association between independent variables and the outcome of interest. Results: A total of 1033 eligible participants completed the questionnaire. Although the majority (90%) were aware of clinical research, only 24% have ever participated in this type of research. About half (51%) agreed on providing blanket consent for the use of clinical samples, while a lower percentage (43%) agreed on providing open access to their health records. Privacy concerns and lack of trust in the researcher were cited as major barriers to providing blanket consent. Participation in clinical research and having health insurance were predictors for providing open access to clinical samples and records. Conclusion: The lack of public trust in Jordan toward data privacy is evident from this study. Therefore, a governance framework is needed to raise and maintain the public's trust in big-data research that warrants the future reuse of clinical samples and records. As such, the current study provides valuable insights that will inform the design of effective consent protocols required in data-intensive health research.

Review and standard operating procedures for collection of biospecimens and analysis of biomarkers in new onset refractory status epilepticus.

New onset refractory status epilepticus (NORSE), including its subtype with a preceding febrile illness known as febrile infection-related epilepsy syndrome (FIRES), is one of the most severe forms of status epilepticus. The exact causes of NORSE are currently unknown, and there is so far no disease-specific therapy. Identifying the underlying pathophysiology and discovering specific biomarkers, whether immunologic, infectious, genetic, or other, may help physicians in the management of patients with NORSE. A broad spectrum of biomarkers has been proposed for status epilepticus patients, some of which were evaluated for patients with NORSE. Nonetheless, none has been validated, due to significant variabilities in study cohorts, collected biospecimens, applied analytical methods, and defined outcome endpoints, and to small sample sizes. The NORSE Institute established an open NORSE/FIRES biorepository for health-related data and biological samples allowing the collection of biospecimens worldwide, promoting multicenter research and sharing of data and specimens. Here, we suggest standard operating procedures for biospecimen collection and biobanking in this rare condition. We also propose criteria for the appropriate use of previously collected biospecimens. We predict that the widespread use of standardized procedures will reduce heterogeneity, facilitate the future identification of validated biomarkers for NORSE, and provide a better understanding of the pathophysiology and best clinical management for these patients.

Assessment of willingness of Saudi public to participate in a dental biorepository for research purposes.

BACKGROUND: Biobanks/biorepositories are created to collect biospecimens for therapeutic and research uses. The success of the banking concept depends predominantly on the public's understanding and desire to contribute, which triggers several social, cultural, and ethical implications. The aim of this study is (1) to assess the willingness among adults attending outpatient clinics at King Abdulaziz Medical City to donate dental tissue samples to a biorepository for research purposes, (2) to identify the significant predictors for positive attitudes and willingness to donate dental bio-specimens. METHODOLOGY: This is a cross-sectional study that targeted 401 adult outpatients attending King Abdulaziz Medical City in Riyadh, Saudi Arabia. The questionnaire focused on three main parts: demographic and personal characteristics, and previous experience regarding biorepositories (part I), knowledge about dental biorepositories (part II), and willingness and attitudes towards donating dental biospecimens (part III). Data collected were analyzed using the statistical program SAS (version 9.4) with 0.05 level of significance to determine the willingness of donating tissue to biobanks for biomedical research purposes, measure knowledge and attitude about biobanking, find the association between the assessed variables, and identify significant predictors of positive attitude to donate dental biospecimens. RESULTS: 66% of the participants were willing to donate dental biospecimens, however only 33.9% showed good level of knowledge. Despite the notable lack of knowledge, 54% respondents had favorable attitude towards donating dental biospecimens, and only 17% were negative while the remaining 29% were neutral. Previous involvement in medical research, previous blood testing or donation, female gender, higher education level, employment in a medical facility, and higher monthly income variables were found to be significantly associated with higher willingness to donate dental biospecimens. CONCLUSION: Although the majority of the participants exhibited lack of knowledge about dental biorepositories, they showed high willingness and good attitude towards donating dental biospecimens. This favorable attitude is, in turn, encouraging for the future establishment of dental biorepositories in Saudi Arabia. Six factors were significantly associated with the willingness to donate dental biospecimens, out of these, female gender, previous blood testing/donation, previous involvement in medical research were found to be strong predictors.

Quality Assessment of Cryopreserved Human Biological Samples from the Biobank of Barretos Cancer Hospital.

Background: Biobanks process, store, and supply biological materials for research. Preanalytical factors, especially storage time and temperature, must be controlled and standardized at all stages when handling biospecimen samples, especially because the literature reports highly contradictory optimal parameters. As large-sample studies are required to better understand the influence of time and temperature on cryopreserved samples' quality for genomic research, this study evaluated the integrity and quality of cryopreserved samples stored for up to 9 years at the biobank of Barretos Cancer Hospital, one of the largest biobanks in Latin America. Methods: We randomly selected 447 samples with tumor tissue paired with buffy coat or peripheral blood mononuclear cells (PBMCs) that were stored from 2008 to 2016. The genetic material quality was evaluated based on RNA integrity (RIN) and DNA integrity (DIN) ≥7, which indicated undegraded samples, and compared with storage time, which means that for DNA storage time, samples <8.1 and ≥8.1 years and for RNA <4.5 and ≥4.5 were used. Results: A total of 190 tumor tissues were eligible for DNA and RNA extraction. Those stored for 8 years had lower DIN (68%) than those stored for a shorter period (92%). A similar pattern, based on storage time (<8.1 and ≥8.1 years), was observed in the buffy coat (74% and 95%, respectively) and PBMCs (54% and 96%, respectively). For RNA extracted from tumor tissues, we observed lower RIN in samples stored for 4.5 years (17%) than in samples stored for a shorter period (45%). Buffy coat and PBMC samples stored at -30°C exhibited greater degradation (26%) than those stored at -80°C (1%). The DIN (p = 0.15) and RNA (p = 0.18) were unrelated to topography type. Conclusion: The temperature, particularly cryopreservation methodology, and storage time were the main factors that affected nucleic acid integrity, especially RNA, during cryopreservation of biospecimens.

The children's brain tumor network (CBTN) - Accelerating research in pediatric central nervous system tumors through collaboration and open science.

Pediatric brain tumors are the leading cause of cancer-related death in children in the United States and contribute a disproportionate number of potential years of life lost compared to adult cancers. Moreover, survivors frequently suffer long-term side effects, including secondary cancers. The Children's Brain Tumor Network (CBTN) is a multi-institutional international clinical research consortium created to advance therapeutic development through the collection and rapid distribution of biospecimens and data via open-science research platforms for real-time access and use by the global research community. The CBTN's 32 member institutions utilize a shared regulatory governance architecture at the Children's Hospital of Philadelphia to accelerate and maximize the use of biospecimens and data. As of August 2022, CBTN has enrolled over 4700 subjects, over 1500 parents, and collected over 65,000 biospecimen aliquots for research. Additionally, over 80 preclinical models have been developed from collected tumors. Multi-omic data for over 1000 tumors and germline material are currently available with data generation for > 5000 samples underway. To our knowledge, CBTN provides the largest open-access pediatric brain tumor multi-omic dataset annotated with longitudinal clinical and outcome data, imaging, associated biospecimens, child-parent genomic pedigrees, and in vivo and in vitro preclinical models. Empowered by NIH-supported platforms such as the Kids First Data Resource and the Childhood Cancer Data Initiative, the CBTN continues to expand the resources needed for scientists to accelerate translational impact for improved outcomes and quality of life for children with brain and spinal cord tumors.

Optimal design and application of information management system of biobank in hospitals / 中华医学科研管理杂志

Objective:To establish a standardized information management system (IMS) for preserving, managing, querying, and performing statistics on biospecimens and their clinical data, which is conducive to improving the utilization of biobank.Methods:Under the premise of ensuring operating environment and data security, a database-based data logic relationship model is created and applied to the IMS to manage and analyze biospecimens and their supporting clinical information of patients enrolled in the biobank of our center.Results:To ensure the establishment of the follow-up cohort, biospecimens and clinical information of inpatients and outpatients were continuously collected in the biobank of our center. Since December 2014, more than 270 000 biospecimens from inpatient, outpatient, and scientific research have been preserved. The IMS optimized by this model efficiently completes the basic work of the biobank. At the same time, the data can be queried jointly and in batches, and then converted into a report format for statistical analysis.Conclusions:The IMS of our center is suitable for application and popularization as a construction and management model for the hospital-level biobank, which meets the daily work of the biobank and diverse research needs, and provides a convenient platform and rich resources for the development of precision medicine.