Bio Banking Research Articles

Assessment of knowledge and attitude about bio banking amongst the general public and their willingness to donate bio specimens from a hospital in India

This study aims to know the attitude and perceptions of biobanks among the general public and their willingness to donate bio specimens from a hospital in India. Biobanks collect, store bio specimens for diagnosis, treatment and research purpose. According to modern bio banking, bio specimens needs to have standard operating procedures to do so. The bio specimen should be kept confidential and anonymous. Do they have an awareness of the role of biobanks? Do they know the concept of consent and implications of retaining specimens in biobanks? This paper evaluates these areas. A cross sectional study was conducted among general public above 18 years of age using convenience sampling. The data was obtained through a questionnaire which was distributed via online using Google forms and assessed the ethical perception of the general public regarding their willingness to donate own biological samples for teaching and research purposes and their awareness and attitude on biobanks. A total of 200 participants were included in the study. 71.4% participants did not have any prior knowledge about biobanks. 59.6% of the participants were willing to donate the biospecimens for advancement in medical research, benefit the society and future generation. 43.8% of respondents emphasised the main discouraging factor in participation in biobank research is that they have fear of sample exploitation. 37.9 percent participants responded that they would like to specify the scope for use when granting permission to use their sample for research. Biobank will advance in medical research only when medical institutes and government bodies’ install privacy, consent laws and initiate lot of awareness programmes to improve public perspectives and knowledge about biobanking. Bangladesh Journal of Medical Science Vol.23 (Special Issue) 2024 p.S53-S59

BIOBANKING SCHEME FOR FOREST CONSERVATION IN PENINSULAR MALAYSIA: A BRIEF APPRAISAL

Tropical rainforest in Peninsular Malaysia is home to a highly diverse flora and fauna. The biodiversity and sustainability of the forest are highly potential to mitigate climate change and its adverse consequences. Although Malaysia is committed to preserve the forest in recognition of the important services, the threat against the forest of degradation and even deforestation for demand of other prevailing interests remain. Bio banking scheme has been one of market-oriented mechanisms which have been suggested to fund towards ensuring the sustainability of the biodiversity in Malaysia. By examining the experience of biobank for forest or environmental conservation, this paper considers issues and challenges in the creation of such biobank in Peninsular Malaysia as proposed in a study. For this, it considers two existing schemes of biobanking, one is implemented in the New South Wales, Australia, and the other is in Sabah, Malaysia, the Malua Biobank. The main features of these two schemes are examined and the issues faced are considered in the context of the Peninsular Malaysia. Creation of such biobank is significant to promote for further efforts in finding alternatives in forest conservation.

Assessment of knowledge, concerns and support of physicians towards bio banks in Pakistan, and their willingness to donate

Bio specimen collection and storage and bio bank data have numerous ethical issues. Stakeholders' views on these ethical problems are essential because they may assist establish ethical standards for bio banking. The aim of this research is to assess Pakistani doctors' views and knowledge regarding bio banking and willingness to donate. A cross-sectional online survey was conducted to poll Pakistani physicians’ attitudes and views regarding bio banks. Between January and April 2021.473 doctors completed the questionnaire. Participants had sufficient knowledge of bio banking. Of those, 74.2 "Human Genome Project," while 72.5% revealed that they were familiar with the term "bio banking." 61.5% of the participants showed their willingness to donate bio specimens. Marital status (0.001), faculty (0.001), involvement in research (0.038), blood and tissue testing in recent years (0.420) and demonstrated a significant relationship with willingness to donate. While general health status, recent hospitalization, family history of inherited diseases, incidence of chronic disease, and gender had no statistically significant associations with willingness to donate. Although65.8% agreed that bio banks should be able to exchange bio specimens with foreign research groups and only 49.5% agreed on collaboration with pharmaceutical companies.

DNA banking, its current awareness and national status in biomedical research in India, a survey

A Biobank/Biorepository is an organized collection of resources that can be accessed to retrieve biological material and data for research purpose. Human specimen repositories (adult and paediatric) take lead amongst the various types of biorepositories. Patient's bio samples are a rich source of genetic information and therefore can form the basis of diagnostics, forensics and multidimensional disciplines of biomedical research. The advent of molecular techniques and the technological upsurge in the management of genetic resources has facilitated the human DNA sampling and data collection leading to the emergence of DNA banking. DNA banking has paved a new path in precision oncology and personalized medicine. This article highlights the current scenario concerning the general awareness, scientific consciousness and current national and international practices being initiated and in practice for the establishment of bio banking facilities particularly DNA bio banking.

Assessment of Knowledge, Concerns and Support of Physicians towards Bio banks in Pakistan, and their Willingness to Donate

Bio specimen collection and storage and bio bank data have numerous ethical issues. Stakeholders' views on these ethical problems are essential because they may assist establish ethical standards for bio banking. Physicians are key stakeholders because they may contact prospective participants and become bio bank users. The aim of this research is to assess Pakistani doctors' views and knowledge regarding bio banking and willingness to donate. A cross-sectional online survey was conducted to poll Pakistani physicians’ attitudes and views regarding bio banks. Between January and April 2021.473 doctors completed the questionnaire. Participants had sufficient knowledge of bio banking. Of those, 74.2 stated that they had heard of the term "Human Genome Project," while 72.5% revealed that they were familiar with the term "bio banking." 61.5% of the participants showed their willingness to donate bio specimens. Marital status (0.001), faculty (0.001), involvement in research (0.038), blood and tissue testing in recent years (0.420) and demonstrated a significant relationship with willingness to donate. While general health status, recent hospitalization, family history of inherited diseases, incidence of chronic disease, and gender had no statistically significant associations with willingness to donate. Although65.8% agreed that bio banks should be able to exchange bio specimens with foreign research groups and only 49.5% agreed on collaboration with pharmaceutical companies. Although more than half of Pakistani doctors heard of bio banking, the presence of bio banks in Pakistan was restricted. They were concerned about marketing, widespread consent and confidentiality. There is a great gap of knowledge and awareness among stakeholders that should encompass several educational initiatives. Community conversations on the problems of marketing and the return of research findings should begin to achieve an agreement.

An effective Bio banking strategy for Indian Native chicken: Kadaknath through Primordial Germ Cells cryopreservation and Gonadal transplantation

An effective Bio banking strategy for Indian Native chicken: Kadaknath through Primordial Germ Cells cryopreservation and Gonadal transplantation

Factors associated with study protocol adherence and bio banking participation in reproductive medicine clinical trials and their relationship to live birth.

What demographic and baseline characteristics are predictive of adherence to reproductive medicine clinical trial protocols, live birth or participation in genetic studies? Race, BMI and lower income are associated with likelihood of non-adherent to reproductive medicine clinical trial protocols, while race influences collection of biological samples and non-adherent to study protocols is associated with lower probability of live birth. Although aspects of adherence to study protocol have previously been evaluated as individual factors in infertile women, the factors that affect overall non-adherent to study protocol have not been previously evaluated. A secondary data analysis of 1650 participants from two prospective multicenter, double-blind controlled studies was carried out: Pregnancy in Polycystic Ovary Syndrome II (PPCOS II) and Assessment of Multiple Intrauterine Gestations from Ovarian Stimulation (AMIGOS). The participants were women aged 18-40 years old with either polycystic ovary syndrome (PCOS) with ovulatory dysfunction in combination with either hyperandrogenemia and/or polycystic ovarian morphology (PPCOS II), or regular ovulatory cycles with unexplained infertility (AMIGOS). The study was carried out in 14 clinical sites in the USA. Non-adherence to clinical trial protocol was chosen as the primary outcome for this analysis. To evaluate whether demographic and baseline characteristics were predictive of adherence to study protocols, live birth or participation in blood sampling for DNA and repository, and pregnancy registry, these putative factors were compared between the outcome measures. Logistic regression was used to establish a prediction model using the putative predictors introduced above. Women who self-identified as African American or Asian and those with higher BMI and lower household income were less likely to adhere to protocol. Non-adherence to the study protocol was associated with a lower probability of live birth (odds ratio: 0.180, 95% CI: 0.120, 0.272, P < 0.001). African Americans or Asians were less likely to participate in optional study DNA collection compared to Whites. Participants who were African American or with high annual income or from the Southwest sites or had PCOS were less likely to participate in the blood repository studies. Race and ethnicity were self-reported and such self-classification to strict race and ethnicity may not always be representative of a whole racial or ethnic group. This study included two US multicenter trials and therefore the findings may not be extrapolated to international trials. Identification of populations with low participation is an important initial step, as further investigation can develop specific measures to improve adherence to study protocols and participation in biospecimen banking and thereby extend the representativeness of reproductive medicine clinical trial findings. Supported by NIH Eunice Kennedy Shriver NICHD Grants: U10 HD39005, U10 HD38992, U10 HD27049, U10 HD38998, U10 HD055942, HD055944, U10 HD055936, U10HD055925, PPCOSII: U10 HD27049, U10 HD38992, U10 HD055925, U10 HD39005, U10 HD38998, U10 HD055936, U10 HD055942, U10 HD055944; Clinical Reproductive Endocrine Scientist Training Program (CREST): R25HD075737. Outside this study, M.P.D. received NIH/NIHCD research grant and R.S.L. received research grant from Ferring and was consultant for Bayer, Kindex, Odega, Millendo and AbbVie. ClinicalTrials.gov number: NCT00719186; NCT01044862.

Prospective Population-Based Analysis of Characteristics and Therapy Options in AML: The Case of Catalonia (PERIS Project)

Introduction:Acute myeloid leukemia (AML) real-world incidence has been investigated in a limited number of European countries such as Sweden, Denmark and a few others. These prospective population-based analyses give a more precise idea of AML as a health problem than registry data from cooperative groups or other sources, that usually include selected cases as part of research studies and/or therapy trials. In October 2016, the Autonomous Government of Catalonia funded a project (PERIS SLT002/16/00433) to prospectively collect all AML cases from our territory. Objective:To investigate the incidence, characteristics and treatment decisions in all consecutive AML patients diagnosed in Catalonia between January 2017 and December 2019. Methods:Inclusion criteria were diagnosis of AML according the WHO 2016 criteria, both primary and secondary (APL excluded) with an age &amp;gt;18 years. The project was disseminated to all hospitals from Catalonia regardless of their size, having at least one hematologist. A specific informatics tool was implemented for remote reporting of the cases. All data were anonymized. In parallel, a circuit for centralized bio banking of patients' samples was designed. The database included the main clinical, laboratory data as well as the initial therapeutic approach. Cases included in our CETLAM group cooperative studies were automatically linked to the trial database for collecting detailed information. Statistical analyses were performed with R packages. Results:Assuming an incidence of AML of 4 cases per 100,000 inhabitants (based on previous reported data from others), we expected 912 cases during three years in the 7,6 million population of Catalonia. Our prospective registry included 750 consecutive AML patients, 82% of the expected cases. The remaining 18% could be explained by the exclusion of APL, age below 18 years, or underreporting. Seventy percent of patients (n=527) were diagnosed and treated in the 5 large University Hospitals from Barcelona and the two adjacent cities (Badalona and Hospitalet). Table 1 shows the main characteristics of the patients. Among the 390 patients up to 70 years, 272 (70%) were enrolled in the CETLAM AML-12 protocol that included intensive chemotherapy (ICT) and risk adapted hematopoietic cell transplantation (HCT). Forty-one additional patients (11%) in this age group received other ICT in different clinical trials. A remaining 73 patients (20%) were treated with other intensive or non-intensive approaches outside trials. In the group of 360 patients older than 70 years only a 33% (n= 119) were treated under the risk-adapted CETLAM AML-16 protocol for elderly AML patients. This trial included ICT as in the CETLAM-12 in case of favorable genetic features; this was received by 13 of the 119 patients (11%) enrolled. The remaining patients of CETLAM-16 were treated with low-intensity chemotherapy (oral fludarabine, subcutaneous (SC) cytarabine and G-CSF or azacytidine) and 97 additional elderly patients were included in other clinical trials mostly with targeted and hypomethylating agents (27%). Other active therapies outside trials (usually low-intensity) were administered in 50 additional patients (14%) whereas the remaining 94 patients (26%) only received supportive measures (transfusions, hydroxyurea, antibiotics, palliation, or no treatment), because of one or more of the following: advanced age, poor AML features or severe clinical condition. Overall survival (OS) of the whole series at 2 years was 31±2% (CI: 27-35). Patients younger than 70 years had a 2-year OS of 47±3% (CI: 41-53) compared to 11±3% (CI: 7-17) for those above 70 years (p&amp;lt;0.001) (Image 1). Conclusions:This prospective study is highly representative of the diagnosis and treatment of AML in Catalonia. The median age at diagnosis was 70 years. Of note, 81% of patients up to 70 years were enrolled in ICT trials. The proportion of patients in trials in the elderly group was lower although still remarkable (60%). In this advanced age group, a 26% of patients were treated with supportive measures only. Despite the high inclusion rate in clinical trials, only one third of newly diagnosed AML patients have the probability to survive at 2 years, with a dismal outcome in those above 70 years. Therefore, the investigation of novel and more effective treatments remains mandatory. This series will be detailed and updated during the meeting. Disclosures Salamero: Pfizer:Consultancy;Jazz Pharmaceuticals:Consultancy, Honoraria;Daichii Sankyo:Honoraria;Novartis:Consultancy, Honoraria;Celgene:Consultancy, Honoraria.Olivera:BAYER:Consultancy;Pfizer:Consultancy, Speakers Bureau;Daiichi Sankyo:Consultancy, Speakers Bureau;Boehringer Ingelheim:Consultancy, Speakers Bureau.Sureda Balari:Celgene:Consultancy, Honoraria;Merck Sharpe and Dohme:Consultancy, Honoraria, Speakers Bureau;Sanofi:Consultancy, Honoraria;Novartis:Consultancy, Honoraria;Gilead/Kite:Consultancy, Honoraria;Janssen:Consultancy, Honoraria;Incyte:Consultancy;Roche:Honoraria;BMS:Speakers Bureau;Celgene/Bristol-Myers Squibb:Consultancy, Honoraria;Takeda:Consultancy, Honoraria, Speakers Bureau.Ribera:Pfizer, Amgen:Research Funding;Pfizer, Amgen, Ariad, Novartis:Consultancy, Speakers Bureau.Sierra:Jazz Pharmaceuticals:Research Funding;Pfizer:Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau;Daiichi Sankyo:Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau;Abbvie:Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau;Novartis:Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau;Astellas:Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees;Roche:Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees;Gilead-Kite:Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees.

Abstract IA18: North Carolina Central University and Duke Cancer Institute's collaborative cancer research and education program: Connecting cancer disparities translational research, clinical trials operations, and community engagement

Abstract Three interrelated contributors to cancer disparities include the lack of diversity among investigators contributing to cancer research, the deficiency of minority participation in clinical trials and bio-banking, and the need to advance community engagement as a vital component of the translational research spectrum. The North Carolina Central University and Duke Cancer Institute's Cancer Disparities Translational Research Partnership (NCCU-DCI CDTRP) (P20 PACHE), through its Cancer Research and Education Program (C-REP), provides a Translational Immersion Experience (TIE) that spans the full translational research spectrum, for traditionally under-represented PhD students, postdoctoral fellows, and early-stage investigators. The goals of TIE are to (1) provide cancer disparities research training with an emphasis on translational laboratory science including high-throughput screening/drug discovery, (2) equip trainees with unique training and education in the operational infrastructure that supports clinical research and trials, (3) highlight strategies to increase diverse participation in clinical trials and bio banking, and (4) learn and apply principles of community engagement through community-based programs and outreach. Using multimodal training techniques, the TIE program provides training and education in real-life settings that expose trainees to the full translational research spectrum across two diseases that disproportionality affect African Americans at significantly higher rates, prostate cancer and inflammatory breast cancer. The overarching goal is to bolster our trainees' experiences and training to contribute to innovative technologies and discoveries and provide access to training that spans beyond the traditional curriculum in areas of high need in translational cancer disparities research such as minority accrual and clinical trials operations. The program includes evidence-based workshops in healthy mentor-mentee relationships, building and sustaining resilience, and sharpening grantwriting skills coupled with ongoing external evaluation to provide real-time feedback on the program. We present the preliminary evaluation data based on the first cohort of the C-REP TIE program. Citation Format: Kevin P. Williams, Nadine J. Barrett, Carla E. Oldham, Holly Hough, Artis Woodard, Jennifer Freedman, Gayathri R. Devi, Steven R. Patierno. North Carolina Central University and Duke Cancer Institute's collaborative cancer research and education program: Connecting cancer disparities translational research, clinical trials operations, and community engagement [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr IA18.

Bio banking of indigenous chicken germplasm by cryo-preservation of germline potent early embryonic cells and gonadal tissues

Bio banking of indigenous chicken germplasm by cryo-preservation of germline potent early embryonic cells and gonadal tissues

Save the children by treating their mothers (PriVileG-M-study) - study protocol: a sequentially randomized controlled trial of individualized psychotherapy and telemedicine to reduce mental stress in pregnant women and young mothers and to improve Child\u2019s health

BackgroundAs early as pregnancy, maternal mental stress impinges on the child’s development and health. Thus, this may cause enhanced risk for premature birth, lowered fetal growth, and lower fetal birth weight as well as enhanced levels of the stress hormone cortisol and lowered levels of the bonding hormone oxytocin. Maternal stress further reduces maternal sensitivity for the child’s needs which impairs the mother-child-interaction and bonding. Therefore, prevention and intervention studies on mental stress are necessary, beginning prenatally and applying rigorous research methodology, such as randomized controlled trials, to ensure high validity.MethodsA randomized controlled trial is used to assess the impact of psychotherapy and telemedicine on maternal mental stress and the child’s mental and physical health. Mentally stressed pregnant women are randomized to an intervention (IG) and a not intervened control group. The IG receives an individualized psychotherapy starting prenatal and lasting for 10 months. Afterwards, a second randomization is used to investigate whether the use of telemedicine can stabilize the therapeutic effects. Using ecological momentary assessments and video recordings, the transfer into daily life, maternal sensitivity and mother-child-bonding are assessed. Psycho-biologically, the synchronicity of cortisol and oxytocin levels between mother and child are assessed as well as the peptidome of the colostrum and breast milk, which are assumed to be essential for the adaptation to the extra-uterine environment. All assessments are compared to an additional control group of healthy women. Finally, the results of the study will lead to the development of a qualification measure for health professionals to detect mental stress, to treat it with low-level interventions and to refer those women with high stress levels to mental health professionals.DiscussionThe study aims to prevent the transgenerational transfer of psychiatric and somatic disorders from the mother to her child. The effects of the psychotherapy will be stabilized through telemedicine and long-term impacts on the child’s and mothers’ mental health are enhanced. The combination of psychotherapy, telemedicine and methodologies of ecological momentary assessment, video recording and bio banking are new in content-related and methodological manner.Trial registrationGerman Clinical Trials Register: DRKS00017065. Registered 02 May 2019. World Health Organization, Universal Trial Number: U1111–1230-9826. Registered 01 April 2019.

Optimization of extraction of genomic DNA from archived dried blood spot (DBS): potential application in epidemiological research & bio banking.

Background: Limited infrastructure is available to collect, store and transport venous blood in field epidemiological studies. Dried blood spot (DBS) is a robust potential alternative sample source for epidemiological studies & bio banking. A stable source of genomic DNA (gDNA) is required for long term storage in bio bank for its downstream applications. Our objective is to optimize the methods of gDNA extraction from stored DBS and with the aim of revealing its utility in large scale epidemiological studies. Methods: The purpose of this study was to extract the maximum amount of gDNA from DBS on Whatman 903 protein saver card. gDNA was extracted through column (Qiagen) & magnetic bead based (Invitrogen) methods. Quantification of extracted gDNA was performed with a spectrophotometer, fluorometer, and integrity analyzed by agarose gel electrophoresis. Result: Large variation was observed in quantity & purity (260/280 ratio, 1.8-2.9) of the extracted gDNA. The intact gDNA bands on the electrophoresis gel reflect the robustness of DBS for gDNA even after prolonged storage time. The extracted gDNA amount 2.16 - 24 ng/µl is sufficient for its PCR based downstream application, but unfortunately it can't be used for whole genome sequencing or genotyping from extracted gDNA. Sequencing or genotyping can be achieved by after increasing template copy number through whole genome amplification of extracted gDNA. The obtained results create a base for future research to develop high-throughput research and extraction methods from blood samples. Conclusion: The above results reveal, DBS can be utilized as a potential and robust sample source for bio banking in field epidemiological studies.

Studying Cryptosporidium Infection in 3D Tissue-derived Human Organoid Culture Systems by Microinjection.

Cryptosporidium parvum is one of the major causes of human diarrheal disease. To understand the pathology of the parasite and develop efficient drugs, an in vitro culture system that recapitulates the conditions in the host is needed. Organoids, which closely resemble the tissues of their origin, are ideal for studying host-parasite interactions. Organoids are three-dimensional (3D) tissue-derived structures which are derived from adult stem cells and grow in culture for extended periods of time without undergoing any genetic aberration or transformation. They have well defined polarity with both apical and basolateral surfaces. Organoids have various applications in drug testing, bio banking, and disease modeling and host-microbe interaction studies. Here we present a step-by-step protocol of how to prepare the oocysts and sporozoites of Cryptosporidium for infecting human intestinal and airway organoids. We then demonstrate how microinjection can be used to inject the microbes into the organoid lumen. There are three major methods by which organoids can be used for host-microbe interaction studies-microinjection, mechanical shearing and plating, and by making monolayers. Microinjection enables maintenance of the 3D structure and allows for precise control of parasite volumes and direct apical side contact for the microbes. We provide details for optimal growth of organoids for either imaging or oocyst production. Finally, we also demonstrate how the newly generated oocysts can be isolated from the organoid for further downstream processing and analysis.

Optimization of extraction of genomic DNA from archived dried blood spot (DBS): potential application in epidemiological research &amp; bio banking

Background:Limited infrastructure is available to collect, store and transport venous blood in field epidemiological studies. Dried blood spot (DBS) is a robust potential alternative sample source for epidemiological studies &amp; bio banking. A stable source of genomic DNA (gDNA) is required for long term storage in bio bank for its downstream applications. Our objective is to optimize the methods of gDNA extraction from stored DBS and with the aim of revealing its utility in large scale epidemiological studies. Methods:The purpose of this study was to extract the maximum amount of gDNA from DBS on Whatman 903 protein saver card. gDNA was extracted through column (Qiagen) &amp; magnetic bead based (Invitrogen) methods. Quantification of extracted gDNA was performed with a spectrophotometer, fluorometer, and integrity analyzed by agarose gel electrophoresis. Result:Large variation was observed in quantity &amp; purity (260/280 ratio, 1.8-2.9) of the extracted gDNA. The intact gDNA bands on the electrophoresis gel reflect the robustness of DBS for gDNA even after prolonged storage time. The extracted gDNA amount 2.16 – 24 ng/µl is sufficient for its PCR based downstream application, but unfortunately it can’t be used for whole genome sequencing or genotyping from extracted gDNA. Sequencing or genotyping can be achieved by after increasing template copy number through whole genome amplification of extracted gDNA. The obtained results create a base for future research to develop high-throughput research and extraction methods from blood samples.Conclusion:The above results reveal, DBS can be utilized as a potential and robust sample source for bio banking in field epidemiological studies.

Optimization of extraction of genomic DNA from archived dried blood spot (DBS): potential application in epidemiological research & bio banking

Background: Limited infrastructure is available to collect, store and transport venous blood in field epidemiological studies. Dried blood spot (DBS) is a robust potential alternative sample source for epidemiological studies & bio banking. A stable source of genomic DNA (gDNA) is required for long term storage in bio bank for its downstream applications. Our objective is to optimize the methods of gDNA extraction from stored DBS and with the aim of revealing its utility in large scale epidemiological studies. Methods: The purpose of this study was to extract the maximum amount of gDNA from DBS on Whatman 903 protein saver card. gDNA was extracted through column (Qiagen) & magnetic bead based (Invitrogen) methods. Quantification of extracted gDNA was performed with a spectrophotometer, fluorometer, and integrity analyzed by agarose gel electrophoresis. Result: Large variation was observed in quantity & purity (260/280 ratio, 1.8-2.9) of the extracted gDNA. The intact gDNA bands on the electrophoresis gel reflect the robustness of DBS for gDNA even after prolonged storage time. The extracted gDNA amount 2.16 – 24 ng/µl is sufficient for its PCR based downstream application, but unfortunately it can’t be used for whole genome sequencing or genotyping from extracted gDNA. Sequencing or genotyping can be achieved by after increasing template copy number through whole genome amplification of extracted gDNA. The obtained results create a base for future research to develop high-throughput research and extraction methods from blood samples. Conclusion: The above results reveal, DBS can be utilized as a potential and robust sample source for bio banking in field epidemiological studies.

Optimization of extraction of genomic DNA from archived dried blood spot (DBS): potential application in epidemiological research &amp; bio banking

Background:Limited infrastructure is available to collect, store and transport venous blood in field epidemiological studies. Dried blood spot (DBS) is a robust potential alternative sample source for epidemiological studies &amp; bio banking. A stable source of genomic DNA (gDNA) is required for long term storage in bio bank for its downstream applications. Our objective is to optimize the methods of gDNA extraction from stored DBS and with the aim of revealing its utility in large scale epidemiological studies. Methods:The purpose of this study was to extract the maximum amount of gDNA from DBS on Whatman 903 protein saver card. gDNA was extracted through column (Qiagen) &amp; magnetic bead based (Invitrogen) methods. Quantification of extracted gDNA was performed with a spectrophotometer, fluorometer, and integrity analyzed by agarose gel electrophoresis. Result:Large variation was observed in quantity &amp; purity (260/280 ratio, 1.8-2.9) of the extracted gDNA. The intact gDNA bands on the electrophoresis gel reflect the robustness of DBS for gDNA even after prolonged storage time. The extracted gDNA amount 2.16 – 24 ng/µl is sufficient for its PCR based downstream application, but unfortunately it can’t be used for whole genome sequencing or genotyping from extracted gDNA. Sequencing or genotyping can be achieved by after increasing template copy number through whole genome amplification of extracted gDNA. The obtained results create a base for future research to develop high-throughput research and extraction methods from blood samples.Conclusion:The above results reveal, DBS can be utilized as a potential and robust sample source for bio banking in field epidemiological studies.

Big Data in Child and Adolescent Psychiatry: Is It Taking Us Where No Man Has Gone Before?

“Big Data” refers to a massive volume of data that usually require large computational resources to be processed. In recent years, it has shown opportunities for data-driven approaches instead of theory-driven approaches and discovery of patterns based on data collected in routine clinical care enriched with other sources. It holds promise of guidance of personalized care based on each and every one of our patients and results that are more ecologically valid than ever before. This Symposium will present findings of some recent big data projects in child and adolescent psychiatry and cover clinical decision support systems, text mining methods, emerging applications of brain imaging and bio banking, data-sharing models, and ethical issues.

SURVIVE: let the dead help the living—an autopsy-based cohort study for mapping risk markers of death among those with severe mental illnesses

Abstract Background: Forensic autopsy strategies may improve differential diagnostics both post-mortem and ante-mortem and aid in clinical settings concerning preventive efforts for premature mortality. Excess mortality and reduced life expectancy affect persons with severe mental illnesses (SMI) for multi-faceted reasons that remain controversial. Somatic conditions, medical treatment and lifestyle diseases, which are primarily examined in the living, contribute to premature deaths. The underlying pathophysiological mechanisms are unclear, though, and the benefits of a focused, standardised autopsy remain unproven. We have developed and implemented an optimised molecular–biological autopsy for deceased persons with SMI. Our aim is to map the occurrence of 1) somatic diseases and organ changes; 2) metabolic syndrome; 3) use and abuse of alcohol, pharmaceuticals and psychoactive substances; 4) pharmacokinetic and pharmacodynamic factors in the metabolism of pharmaceuticals; and 5) genetic variations (acquired and/or congenital) in sudden cardiac death. Additionally, we hope to contribute to diagnostic treatments and preventive measures to benefit those living with SMI. Methods: SURVIVE: let the dead help the living is a prospective, autopsy-based study on 500 deceased persons with SMI subjected to forensic autopsies under the Danish Act on Forensic Inquests and Autopsy. The autopsies followed an extended, standardised autopsy protocol comprised of whole-body computed tomography scanning, magnetic resonance imaging of the heart and brain and an extended forensic autopsy, including a wide panel of analyses (toxicology, microbiology, genetics, histology and biochemical analysis). Additionally, post-mortem data were linked to ante-mortem health data extracted from Danish national health registers. Discussion: The SURVIVE autopsy procedure, including tissue sampling and bio banking, has been shown to be effective. We expect that the SURVIVE study will provide unique opportunities to unravel the mechanisms and causes of premature death in persons with SMI. We also expect that identifying prognostic biomarkers for comorbidities will contribute to prevention of premature deaths and comorbidities in persons with SMI.

Understanding biological mechanisms underlying adverse birth outcomes in developing countries: protocol for a prospective cohort (AMANHI bio-banking) study.

ObjectivesThe AMANHI study aims to seek for biomarkers as predictors of important pregnancy–related outcomes, and establish a biobank in developing countries for future research as new methods and technologies become available.MethodsAMANHI is using harmonised protocols to enrol 3000 women in early pregnancies (8–19 weeks of gestation) for population–based follow–up in pregnancy up to 42 days postpartum in Bangladesh, Pakistan and Tanzania, with collection taking place between August 2014 and June 2016. Urine pregnancy tests will be used to confirm reported or suspected pregnancies for screening ultrasound by trained sonographers to accurately date the pregnancy. Trained study field workers will collect very detailed phenotypic and epidemiological data from the pregnant woman and her family at scheduled home visits during pregnancy (enrolment, 24–28 weeks, 32–36 weeks & 38+ weeks) and postpartum (days 0–6 or 42–60). Trained phlebotomists will collect maternal and umbilical blood samples, centrifuge and obtain aliquots of serum, plasma and the buffy coat for storage. They will also measure HbA1C and collect a dried spot sample of whole blood. Maternal urine samples will also be collected and stored, alongside placenta, umbilical cord tissue and membrane samples, which will both be frozen and prepared for histology examination. Maternal and newborn stool (for microbiota) as well as paternal and newborn saliva samples (for DNA extraction) will also be collected. All samples will be stored at –80°C in the biobank in each of the three sites. These samples will be linked to numerous epidemiological and phenotypic data with unique study identification numbers.Importance of the studyAMANHI biobank proves that biobanking is feasible to implement in LMICs, but recognises that biobank creation is only the first step in addressing current global challenges.

P19.02 Care Coordination: The experience of a Brain Cancer Care Coordinator in Australia

The role of the Brain Cancer Care Coordinator (BCCC) aims to provide expert clinical consultancy to support high level care coordination for patients diagnosed with primary brain cancer. The role has a district-wide focus within the Hunter New England Area (HNE), based at John Hunter Hospital, Newcastle, Australia and is funded by the Mark Hughes Foundation. HNE is a region of 131, 785 square kilometres and includes a metropolitan area, regional communities and a portion of remote communities. HNE consists of a population of 873, 741 which is more than Zurich, Geneva, Basel and Bern’s population’s combined. The diagnosis of a brain tumour can be devastating, debilitating and stressful for not only the patient themselves but also for their entire social support. Within the space of one day, lives can be changed, crucial decisions of treatment need to be made, and exposure to a range of healthcare professionals, tests, reports, and opinions need to be considered. The healthcare system can be incredibly confusing and complex due to the multitude of appointments, range of specialists, debilitating deficits, difficulty accessing services, lack of information, adverse effects from treatment, reduced social support if from a rural area and independence is often taken away such as the ability to drive. Accessing a range of services is difficult and often a lack of information is provided to patients and their families. Caring for a loved one diagnosed with brain cancer is challenging, both emotionally and physically. Witnessing sudden or subtle changes in someone you love is frightening. The varying degrees of change in personality, physical wellbeing, and ultimate loss of lifestyle, can be a burden few can cope with. The BCCC supports the patient and their families from diagnosis through treatment, follow-up, discharge or end of life care. The aim of the BCCC is to provide patient-centred care, advocacy, clinical advice, education, and support, assess needs and make appropriate referrals and bridge the gap between the patient and their specialists to ensure that complex needs of patients and their families are effectively managed. The BCCC coordinates the transitioning of care for rural patients who require care in a metropolitan centre and supports research such as bio banking and clinical trials. The experience of the BCCC since it’s commencement in January 2016 is improved over-all well-being of patients and their family’s through their entire illness trajectory, efficiency of transitions through care, reduced patient distress, and increased compliance with care. There are few BCCC’s in Australia and these positions are often funded by charities such as the Mark Hughes Foundation. The BCCC role should have greater representation within multidisciplinary teams throughout Australia and the world to ensure the highest quality of care is delivered to patients diagnosed with brain cancer.