Fabrizia Bignami
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The document discusses using a hub and spoke model to connect biobanks in Europe. Key points: - A hub and spoke structure will be used with federated databases where hubs provide database services and routing of queries at central access points. - Hubs can focus on different data types like genotypes, phenotypes, samples, or metadata. - A common schema will allow different national hubs to connect. - Work package 5 aims to develop standards for identifiers, communication between biobanks, and a shared lexicon/terminology. - Challenges include changing data definitions, integration of different data types, and dealing with natural language differences between countries.
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This document is an assignment for an Information Technology in Information Agencies course. It contains 3 sections: 1) a definition of information technology and its purposes and functions, 2) an explanation of 5 types of information agencies (libraries, virtual libraries, museums, archives, and record centers) with examples of each, and 3) a description of 5 types of information technology used in information agencies (OCLC, Evergreen, Z39.50, Dublin Core, and digital libraries) along with explanations of each.
The Reference Model for an Open Archival Information System (OAIS)
Slides from a presentation given at: Principles of Digital Preservation: a Hands-On Approach, DPE/Planets/nestor Joint Training Event, National Library of Lithuania, Vilnius, Lithuania, 1-5 October 2007
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Paula Kim
The document discusses biobanking and the patient perspective from the United States. It notes that while there have been discussions around single vs. tiered consent forms for biospecimen donation, a universal action plan is needed. Patients want confidence that their donated biospecimens will be appropriately shared to advance research.
Technopolis
This document summarizes the preliminary results of a stakeholder forum evaluating the Biobanking and BioMolecular resources Research Infrastructure (BBMRI). It analyzes 10 case studies of existing biobanks and finds that most are 5-7 years old and organized nationally. While collections vary greatly in size, there is a trend toward larger international networks. Funding models are mixed but indicate biobanking requires long-term investment and networking can reduce costs. A social network analysis found the core BBMRI members had a central role in previous EU projects, and more institutions should be included to expand the network.
Patient Partner
The document discusses challenges and opportunities around patient involvement in clinical research and biobanking. It describes the objectives and activities of the PatientPartner project, which aims to identify patient needs, facilitate dialogue between stakeholders, and develop strategies to better integrate patient perspectives. The project finds that while full participation models vary, there is agreement on involving patients and a need for basic training, resources, and addressing public perceptions of clinical research.
Beta Report
This document outlines a study evaluating the socio-economic impacts of biobank networking projects. Preliminary results from interviews with members of six biobank networks show several effects, including networking and knowledge transfer. Key factors for generating effects include the size and maturity of biobanks and networks. The study aims to inform evaluation of BBMRI by distinguishing effects of biobanks versus networking and quantifying direct versus indirect impacts, though challenges remain around sampling, attribution and complexity.
Emmanuelle Rial
WP6 of the BBMRI project aims to design an ethical, legal and social framework for establishing BBMRI. It will propose strategies and scenarios through a series of deliverables including reports on ethics policies in BBMRI countries and documents providing recommendations on harmonization and addressing social dimensions. The work package will develop a conceptual model of governance and an operational governance model to guide BBMRI interactions with stakeholders.
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The document discusses the concept of BBMRI Expert Centres, which are proposed as a new public-private partnership model to improve the use of biospecimens for research. The expert centres would provide specialized medical and scientific expertise, standardized analysis platforms, and quality management to facilitate data sharing between academia and industry. This model offers industry access to expertise and reduces sample shipping needs, while avoiding issues around commercialization of samples.
Cees Smit
This document summarizes 40 years of research on hemophilia in the Netherlands. It describes the history of hemophilia research starting in 1972 with a student project. Over the decades, surveys were conducted in 1972, 1978, 1985, 1992, and 2001 that involved thousands of hemophilia patients. The surveys tracked changes in treatment, hospital admissions, bleeding events, and life expectancy over time. Research also examined issues like HIV, hepatitis C, genetic counseling, and quality of life. Future research plans include stronger links between survey data and hospital records, and possible cooperation on a biobank.
Fair Access: a practical approach to policy on access for European biobanking
Fair Access: a practical approach to policy on access for European biobankingBBMRI Stakeholder's Forum
This document summarizes a presentation on fair access policies for biobanks. It discusses defining access narrowly to allow only scientific use of samples, or broadly to optimize research through collaboration with all stakeholders. Fair access should consider donors, collectors, researchers, biobanks, and legal entities. A practical policy frames access through collaboration to assess sample quality and suitability for a given study. Citizen scientist projects can help engage the public and enable new types of research.Eero Vuorio
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Thomas Meitinger
Disease-related biobanks collect human biological samples and associated clinical data from patients to study the causes and outcomes of diseases. These biobanks vary in their sample sizes and types, levels of institutional support, and whether samples and data are collected and stored according to standard procedures. The document provides examples of disease-related biobanks in Europe and North America that have contributed samples to genome-wide association studies, with the total number of samples collected in Europe significantly higher than in North America. It notes that the BBMRI catalogue seeks to provide an overview of disease-related biobanks.
Neil Formstone
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Eero Vuorio
The document summarizes the European Research Infrastructure for Biobanking and Biomolecular Resources (BBMRI) preparatory phase project. It discusses how biobanks across Europe have historically been small and fragmented. The BBMRI aims to integrate these resources to enable large-scale biomedical research. Over 50 institutions from 28 countries are involved in developing common standards, data sharing agreements, and a sustainable funding model to maximize the research potential of Europe's biological samples and data.
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David R. Cox M.D.,Ph.D.
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Markus Perola
The document discusses the mission of Work Package 2 (WP2) of BBMRI, which is to provide a strategy to address the legal, governance, and financial challenges of utilizing large epidemiological sample collections and population cohorts. European investigators have collected population-based cohorts and health data over decades using public funds. BBMRI aims to harmonize data across biobanks to facilitate global comparisons. The document also reviews technical solutions and quality criteria for storage, retrieval, and transfer of DNA samples across five biobanks to demonstrate challenges in studying obesity as a model phenotype.
Jasper Bovenberg
The document discusses the ethical, legal and social issues (ELSI) surrounding biobanks and BBMRI, a European research infrastructure for biobanks and biomolecular resources. It notes that while the founding father of biobanking Antoni van Leeuwenhoek did not consider ELSI, they are important today given concerns about potential misuse of data and the need for public trust and support. The document outlines work being done in BBMRI to address ELSI, including analyzing focus group research on public attitudes, developing legal guidelines and templates through a wiki platform, and considering issues around consent, data sharing and privacy.
Kurt Zatloukal
The document summarizes the European Research Infrastructure for Biobanking and Biomolecular Resources (BBMRI) which aims to integrate existing biobanks and resources across Europe. It discusses the challenges of harmonizing processes and legal/ethical standards. An inventory of existing biobanks has been conducted. A prototype infrastructure is being developed and legal structure as a European Research Infrastructure Consortium is proposed. The BBMRI aims to foster excellence in biomedical research and be a strategic partner for academia, industry, and the public.
Julie Corfield
The document discusses collaboration in biobanking to support pharmaceutical R&D activities. It notes that R&D costs are high and innovation is needed. Biobanks can help by providing samples for research into diseases. The document describes AstraZeneca's global biobank network and examples of collaborations on disease-specific biobanks for conditions like rheumatoid arthritis and COPD. It argues that more collaboration is needed through standards, infrastructure, addressing ethical issues, and meeting customer needs to sustain R&D activities.
Jean Emmanuel Faure
The document discusses European Union actions to support research infrastructures like biobanks. It outlines the establishment of the European Strategy Forum on Research Infrastructures (ESFRI) to develop a long-term vision and policy for research infrastructures. ESFRI's roadmap identified 44 potential projects, including BBMRI, a pan-European biobank infrastructure. The EU provided funding to develop BBMRI and established a legal framework to facilitate multi-country research infrastructures. Future EU funding calls aim to support the construction and operation of infrastructures like BBMRI to enable collaborative research across Europe.
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Fabrizia Bignami
- 1. Database harmonisation and IT infrastructure Jan-Eric Litton, Karolinska Institutet, Stockholm, Sweden 16 September 2009 Preparatory Phase Grant Agreement 212111
- 2. Connecting Biobanks - leading design principals
- 6. bbmri.no bbmri.se id=1 id=1 bbmri.au id=1 bbmri.nl id=1 bbmri.fi id=1
- 7. Common Schema for all national HUBS
- 10. WP5 - objectives Task 1 – consensus on the requirements for a general information management system for biobanks in Europe Task 2 – how to maintain unique and secure identities (object models) for specimens, subjects and biobanks Task 3 – strategy for communication between biobanks including a common nomenclature, compatible software techniques and appropriate information transmission policies
- 11. WP5 - lexicon Swedish version English version Spanish version Italian version Estonia version database federato un tipo di sistema di gestione di basi di dati che integra, in maniera trasparente …..
- 12. WP5 - crew Andrea Calabria, CNR-ITB (IT) Mario Caccamo, EMBL-EBI (UK) Claus Dabringer, UNI-KLU (AT) Johann Eder, UNI-KLU (AT) Paul Flicek, EMBL-EBI (UK) Ruslan Fomkin, KI (SE) Martin Fransson, KI (SE) Hákon Gudbjartsson, deCODE (IS) Andy Harris, UK Biobank (UK) Hans Hillege, UMCG (NL) Maria Krestyaninova, EMBL-EBI (UK) Klaus Kuhn, TUM (DE) Erkki Leego, UTARTU (EE) Jan-Eric Litton, KI (SE) Fernando López, VITRO, SA (ES) Ioannis Michalopoulos, BRFAA (GR) Luciano Milanesi, CNR-ITB (IT) Juha Muilu, NPHI (FI) Louis Rechaussat, INSERM (FR) Blandine Rimbault, INSERM (FR) Tore Risch, UU (SE) Pedro Roiz, VITRO, SA (ES) Paolo Romano, IST (IT) Morris Swertz, UMCG (NL)